Friday, August 31, 2012

Autistifying My Habitat

Kassiane Sibley
timetolisten.blogspot.com

TPGA editor Kassiane Sibley went to Autreat in July, which is a "retreat-style conference run by autistic people, for autistic people and our friends." She has written about her experience there, and has now put into place at home, some of what she learned and encountered at the conference.

At Autreat I learned that my anxiety and my difficulties with doing things that need done (hereafter referred to as “adulting”) are not things that I have to just live with. Internalized ableism says I just need to try harder, and the attitude of “you're an adult and should act like one” says that too, but let's face it: I am an adult, and that does not mean “I magically have everything together without reminders,” it means “you aren't the boss of me! I can eat ice cream for dinner! I do what I want!”

In keeping with the second, realistic definition of being an adult, I set out to make my apartment and my life accessible to me. I've tried systems like Google calendar, and a paper and pencil planner before that, and these just aren't things that work for me-there's too many steps, what with having to remember to put things in there and then having to check it later. If I cannot see it at all times, it does not exist. If it requires me to be able to access a pen or other extra pieces to use it at all, it will not get used because I can't always find a pen. Using what I know about what I need help doing and how my brain works, I set up a set of visual supports.

I came home from Autreat singing the praises of the interaction badges. Wearing an interaction badge at home doesn't exactly work though, it's not like my roommate can see it if I am wearing it and holed up in my room because I don't want to interact! This is my solution:
Each column stands for a method of communication. The one on the left is “any”, the one in the middle is “text only” and where my initial pretty much lives, and the one on the right is the never-used “verbal only” as requested by my roommate. The green squares mean “talk to me about anything, I am open to socialization”. The yellow ones mean “only talk to me if it is important; if it can wait then don't”, and red means “unless you are bleeding out or on fire, leave me alone for now”. It's much better and less stressful to keep unwanted interactions from happening then to find a tactful way of saying “I don't want to talk to you right now” after someone has tried to start a conversation.

As far as leaving the house goes, my big major issue is getting out the door and thinking I forgot something, or getting on the bus and realizing I actually forgot something. For transit users this is much more of a problem than people who drive, since our ability to get from point A to point B is dependent on someone else's schedule. I've always been a compulsive checker, but since I can't consistently hold a list of all the things I need in my head I still frequently forget things, and the very thought of forgetting something essential has brought on legitimate panic attacks.

Solution? Making a checklist! I have one posted by my bedroom door and one posted by my front door: It has all the things that I absolutely need every time I leave the house. I might forget something that I need for a particular instance using this system, but posting the things I always need frees up some working memory for the one-time items. Since I check for my phone and bus pass at each door now, I do not feel the need to check 6 times on the (1 block) walk to the bus stop. Very low chance of forgetting things = very much reduced anxiety, and consistently remembering my ipod = very much reduced sensory overload on the way from point A to point B.

Now, part of Adulting is keeping an abode in a condition other than “all the natural disasters in the U.S. auditioned here”. This means, unfortunately, that I have to do chores on a regular basis; sweeping, mopping, cleaning the sinks, et cetera. One of the reasons I struggle with this is that I have time agnosia (which is what it sounds like. I don't grok time. I can tell you how long an hour is, or a week, but that doesn't mean I really understand what that means) and therefore I don't really get how long ago something was done and if that was too long ago or not. Another reason is that “stuff needs cleaned” is abstract and giant and daunting.

So, I made this chart. The column on the left is things that have been done this week, and the column on the right is things that have not yet been done. I arbitrarily chose a week because “move stuff back to the right on Sunday” is something I can do, and doing each thing once a week is pretty reasonable. Instead of “clean the kitchen” or “clean the bathroom”, each task that is part of cleaning an area gets its own little card. I might not have the spoons to clean the bathroom, but I can probably manage to clean the toilet, for example. At this point in time we have not elected to assign chores, though if it became a problem with one person doing all the work consistently, I would have a “Done by K” and a “Done by A” column rather than just a “done” column.

I hate the grocery store with the passion of 100,000 fiery suns. Perhaps more. Then while in the store I get overwhelmed because I didn't think about what I needed before I went in. The lights and the people and the colors conspire so that I walk out with exactly nothing I needed and all sorts of things I will probably never eat. I cannot count all the times I've walked out of there with something I won't eat but it seemed like a good idea at the time.

So I made this shopping list. If I am fearlessly honest, I do not have a lot of variety in my diet-- I eat kind of like a yuppie toddler, really. I do not try new things unless they present themselves to me. As a result, a list with all the things I frequently eat on it is really useful for me. When I run out of something I move it to the middle column (or the far right one if I don't think I'm going to want it, or if it is out of season). Then I can look at it or take a picture to go to the store, thus allowing me to get in and out of the store in under ten minutes. Most of my time lost in the grocery store was previously spent trying to visualize what the inside of my fridge or cupboard last looked like. Visualizing the list is much easier cognitively.

Back in my youth, I struggled with getting homework done. I recognize that it is a thing that I need to do, but remembering what to do when I both have the ability and time to do it isn't something that comes naturally (see also: I failed at using planners spectacularly). Sometimes I have the ability to sit down and do four or five things, other times focusing on anything is just not going to happen. Fortunately, in college they give you syllabi with all the things that you're going to need to do and when they will be due! Hooray! That means I can do things early when I have the mental energy!

The homework wall is a thing I have actually been doing for quite some time now. This one is from the beginning of last year's fall term. Each item on the syllabus, be it expected reading, a term paper, or a test, gets its own note card. Then I stick all the note cards on the wall until I'm finished with the assignment written on it. I find taking the note cards down immensely satisfying, and the visual reminder that there is an end in sight is also very helpful during mid-term semi-burnout.

Finally, the support I am most proud of. This is my all-the-things board! The upper left hand corner has my general weekly schedule-things that happen at the same day, time, and place every single week. For about the first month of a new schedule I check constantly (I cannot forgive myself if I am late or accidentally forget to go to a recurring event thing. I just can't. I'm weird) and having it right there to check makes my life easier.

Next to that are things that need to be done daily and things that need to be done weekly. Each has a “done” and “not done” column. Putting it where I can see it every day means I am more likely to set aside 30 minutes per class of doing homework or reading-it is written down and in my face, so it exists! Since my brain doesn't really do time, “do weekly” is a way of seeing to it that things like going to the store happen before it is a dire emergency. So the top half of the board is recurring things that probably will settle into a nice routine once the term starts and I am used to the board always being there reminding me.

Underneath, all those little post it notes are one time events. Some of them are doctors' appointments. Some are other appointments. Once whatever is on the post-it happens, I get to take it off, I did not forget (and thus do not need to make a phone call rescheduling), life is good.

The lower right hand corner is a reminder to eat. This is probably the single solitary most important reminder on here. I remember to shower and brush my teeth. I remember my medication. I remember to take what I need with me more often than not. But without reminding, I absolutely will forget to eat before it's dire, at least once a day. Without blood sugar every self-accommodating mechanism, no matter how good, is completely useless.

So far these have been very useful for me, and if I think of a way to do something better I can try it, but just this starting point has reduced my anxiety dramatically. This adult can have velcro all over the wall if she damn well wants, no matter what they all say about being a really real adult.

I'd be interested in knowing what helps other people, too.

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A version of this essay was previously published at timetolisten.com

 

Wednesday, August 29, 2012

Proceed with Caution: Stem Cell Clinical Trial for Autism

Emily Willingham
www.emilywillinghamphd.com

Recent headlines have trumpeted an FDA-approved clinical trial of cord blood-derived stem cells for autism, involving 30 children and two i.v. infusions of cells from each child's own banked cord blood. The stated rationale is a link between inflammation and autism, but I, for one, find that rationale spurious.

The inflammation-autism concept found its footing in part thanks to a study that appeared in 2005 [open access] and described findings linking inflammation in the post-mortem brain and autism. The researchers, based at Johns Hopkins, had examined donated brains from 11 people with autism, six of whom were children, and in particular found evidence of what they called an “inflammatory process” in the cerebellums of brains from autistic people. The autistic group in this study was highly heterogeneous in terms of ages, causes of death, and the presence of epilepsy.

The Hopkins work and a handful of other papers led some researchers to focus on inflammation, particularly neuroinflammation, as causative in autism. In spite of some faint signposts pointing to an association, however, the Johns Hopkins group that published the 2005 paper warns on its website that “there is no indication for using anti-inflammatory medications in patients with autism.” Medications like prednisone, they say, would not affect the brain cells they identified as inflamed because the steroids influence a different part of the immune system.

Although research has yet to link autism and neuroinflammation definitively or even sort of definitively, as with many investigative niches in science, a handful of groups dominates the landscape. Among these groups is a CalTech team led by Paul Patterson, who has written a book about purported links between the immune system and autism. Their most recent findings [paywalled] in a mouse model of autism suggested an association between what they call maternal immune activation (as might be triggered by a viral infection) and autism. In this work, the authors also irradiated affected mice and performed bone marrow transplants that, the team reported, reduced some of the “autism-like” repetitive and “anxiety-like” behaviors. On his blog, Patterson emphasizes that this work was done in mice, not people, and does not provide an indication for invasive and traumatic bone marrow transplants for autism. Indeed, he notes, “We have yet to establish whether it was the infusion of stem cells or the ... transplant procedure itself--complete with irradiation -- that corrected the behaviors.”

The point of a bone marrow transplant is in part to replace and replenish cells that participate in immunity. Stem cells form the replacement material, and of course, medical science now has identified many sources of stem cells. One of these sources is umbilical cord blood, which also contains several other cell types. Parents who want to spend the money for peace of mind can arrange to have their infant’s blood taken at birth and stored privately in a cord blood bank. The self-described “largest and most experienced” bank in the United States is the Cord Blood Registry, which also conducts clinical trials with stem cells from the blood samples. I note that the American Academy of Pediatrics discourages private cord blood banking unless an identified need for stem cell therapy already exists.

Stem cells are, obviously, both controversial and potentially big business. Like gene therapy before it, the field of stem cell therapy was expected to be the Next Big Thing, and for some diseases, it might be keeping that promise. The source of the stem cells can be a big factor in ethics, safety, and efficacy, but the safest and most ethically neutral source for an individual receiving a transplant is presumed to be cells that come from that person. Because cord blood stem cells are taken before mutations make cells cancerous, these cells can be effective in transplants to treat, for example, leukemia.

Possibly the most high-profile potential application of stem cells is as treatment for cancers like leukemia and degenerative neurological disorders. Autism is not a degenerative neurological disorder, but because it is neurological and because of some hints at an involvement of the immune system, groups like Patterson’s have homed in on stem cells as a way to replace ostensibly pathological immune system cells with a fresh, presumably healthy batch. Cord blood seems like the perfect source and relatively safe, and the most desirable approach to administration would be a simple intravenous infusion. A Korean group has tried exactly that for a different disorder, cerebral palsy (CP), infusing a specific type of cord blood stem cells called mononuclear cells into a group of 20 children with CP. Five of the patients, or 25%, showed some improvement. Because this type of trial and treatment is in its infancy, no one know what the long-term implications of such treatments are, but the safety profiles thus far are good.

These results and others applying cord blood stem cells for CP have led to interest in trying out a similar treatment for autism, although not enough time has passed for determinations of long-term outcomes, good or bad. Already, some parents seek stem cell transplantation abroad as a treatment for their children’s autism, even as safeguards for the blood products and their contents are lacking and many for-profit clinics overpromise, at best. In fact and not surprisingly, fraud is common. There is likely no more vulnerable population than parents who are desperately seeking to help their children.

In part in an effort to focus on stem cell interventions for autism in a better-regulated environment, the FDA has just approved a clinical trial that will involve intravenous injection of stem cells derived from cord blood into autistic children, with each child receiving cells from his or her own cord blood. News reports have referred to this planned trial as “groundbreaking,” and one outlet went so far as to announce in a headline that it would “cure autism.” Not everyone, however, received the news with unfettered joy.

The trial is the result of a collaboration between the Cord Blood Registry and Sutter Health pediatric neurologist Michael Chez, who also focuses on an immune link with autism and has written a book about the medical management of autism. Given the news saturation the announcement received, I wouldn’t be surprised if phones at the Cord Blood Registry weren’t buzzing all day long as worried parents anticipating a birth dial in, inspired to bank blood as a treatment against their future child’s possible autism. The Cord Blood Registry appears to want to hammer that point home, offering up this graphic on their clinical research site for the study, emphasizing the CDC’s recent report of a 1 in 88 prevalence of autism in the United States and the five-times greater rates among boys. It’s a clear message to expectant parents who know they’re having boys.

But the graphic and accompanying text don’t say much about the research supporting the endeavor. What we have is a few studies suggesting an autism–immunity link, although not all findings support one [paywall], some partial effectiveness of cord blood cell infusion for cerebral palsy, and no data regarding what effect, if any, a cord blood infusion would have in autism. The rationale for the work appears to be the CP trials and Patterson’s work with a mouse model of inflammation.

In a review that Chez co-authored in 2010 [PDF] about the potential for immune therapy in autism, he cites the 2005 paper from the Johns Hopkins group that assessed inflammation in post-mortem autistic brains. In that review, he also notes that each autistic person has a “uniquely different clinical appearance in each individual” and that there are “subsets of autistic patients” with neuroinflammation. One group from Italy has sought to identify these subsets and characterized four groups: one with immune abnormalities, two with little or no immune abnormalities, and a final group with a mix of traits from the other three groups. Of their population of 245 patients, about 18% fell into the “immune abnormality” group.

The cord blood autism trial will include 30 children, all of whom have cord blood banked with the Cord Blood Registry. Fifteen will receive a stem cell infusion and 15 will receive a placebo injection. After 24 weeks, the two groups and their treatments--stem cell or placebo--will be switched. The endpoints of interest are improvements on behavior scales. Pull together the terms “stem cells” and “autism,” and this trial--based on the news reports at least -- looks like a hot science winner.

In the midst of all of this celebration and starry-eyed excitement about stem cells, however, the consumer would do well to proceed with caution. The trial suffers from two paradoxical issues. First, there doesn’t seem to be a specific autism-related rationale for treating children with stem cell injections. Cerebral palsy and autism can have some overlap and be co-morbid, but they are not the same thing. Yet, if the trial must go on, the proposed population seems too small. As Chez himself has noted, autism is highly heterogeneous. As the Italian group found, a minority percentage seems to represent a subset that might have immune problems. The inclusion criteria for the trial don’t mention any immune-related endpoints. With a small group and a high heterogeneity, even if cord blood–derived stem cell infusions have an effect, the results might be so individual and sporadic that rather than giving answers and hope, the trial may just end with a soft thud of equivocal results.

There is a real essence of “stem cells are hot and autism is hot so lets throw some stem cells at autism” here. Science and clinical trials involving a pediatric population in particular shouldn’t rely on the “throw it at the wall and see if it sticks” mode of testing. Regardless of how safe the protocol is, administering even intravenous infusions to an autistic child can be traumatic for everyone involved. A trial like this seems hasty and the ballyhoo surrounding it overstated and overpromising. Finally, if they do find an effectiveness of cord-blood–derived stem cells for treating autism -- how does that translate into clinical practice? Currently, autism is diagnosed many months or years after birth. Any family hoping to benefit, at least from direct infusion, would have to have had the foresight to privately collect and store their children’s cord blood for any results of this trial to be applicable. And as I’ve noted, that requires no mean outlay for a possibility - autism — that still remains at around 1%.

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A version of this essay was previously published at www.emilywillinghamphd.com.

Monday, August 27, 2012

Autism & Back-to-School: What Do You Wish You Knew?

Does back-to-school make your stomach do backflips? Ours, too. So we asked some of TPGA's contributors what they wish they'd known -- as parents, or as students -- about the back-to-school season. Here's what they shared:

Mir Kamin
wouldashoulda.com

I knew it was okay to press for what my kid needed, but it took me a really long time to learn that it was also okay to admit when it's time to stop trying to hammer your square peg into a round hole (and go find a square hole). I never in my wildest dreams expected to be a part-time homeschooler/unschooler, and yet it turned out to be a wonderful solution for our family once I gave up on the assumption of "making it work" with public school.

Mind you, classroom accommodations provided by my son's IEP worked for a while ... until they didn't. I'm so glad I finally stopped viewing pulling him from public as "failure" and realized it was actually progress. Success -- much like our kids -- is rarely one size fits all!

Nick Walker
walkersensei.com
aikiarts.com

There's a lot that I learned later on, in adolescence and adulthood, that I wish I'd known in kindergarten and elementary school.

I wish I'd known the things that I later learned through aikido training: the self-regulation and self-defense skills; the ability to both inwardly access and outwardly convey calm centeredness and physical confidence.

And I wish I'd known that I wasn't alone, that I would eventually find more and more people like me. By this I mean not only the Autistic community, and the friends I made as a teenager and adult who weren't Autistic but to whom I could relate in other ways. I also mean that I wish I'd known there were others out there who'd seen what I was seeing and experiencing: the dynamics of institutionalized oppression, privilege, marginalization, injustice, and abuse; the fact that school was clearly constructed to brutalize children into soulless conformity and unquestioning compliance, and to crush, rather than cultivate, genuine creativity and curiosity.

I could see all of this clearly, but I had no words for it, and the fact that no one else seemed to be seeing it left me feeling alienated and furious; the frustration ate at me every day for years. I wish someone had said to me, "Yes, what you're witnessing and experiencing is institutionalized social injustice; it's everywhere in the world and it follows the same basic patterns that it has followed throughout history. There are other people who've seen it for what it is, who've come up with words for it and written about it. These systems of injustice dominate human society, and yes, most people are largely oblivious and complicit. But some people have woken up, and more people will; you're not alone."

I wish someone had said this to me on my first day of kindergarten. Never assume a child isn't ready to understand such things. Sometimes the thing that's causing meltdowns and "behavior issues" is that a child DOES understand.

Christa Dahlstrom
hyperlexicon.blogspot.com

Like lots of families, we provide every new teacher, activities director or camp counselor with a "Quick Reference Guide" for our son. It starts by highlighting his strengths and how to capitalize on those. It also talks about what his challenges look like and ideas for preventing them or dealing with them. But unlike many families, we're lucky to have a graphic designer in the house, so ours looks really nice, too. (I kind of think of it as a pamphlet that could be titled: YOU'RE GOING TO REALLY LOVE OUR KID, DAMMIT!!)

We tailor it a bit for each new year - reflecting his new strengths and tips we've discovered to help him be successful -- and for each setting.

We've had many teachers tell us they wish every family would do this for their kids regardless of neurological makeup.

I would also say to start the year by giving new teachers the benefit of the doubt and trying to have an optimistic attitude. It's SO easy to think, "This person has never met my kid and they'll never 'get' him." or -- especially at the pre-school/kindergarten level -- "I'm the only one who understands him/her. How can this possibly work?"

Start by believing it's going to be a positive experience, that the professionals are skilled and compassionate, and that your kid is resilient and adaptable. (I have to work really hard on this sometimes!) Things may not go perfectly, but I've found it's better to avoid being on the defensive from the start -- plus, I think our kids pick up on our fears and it's much easier to build a positive, collaborative relationship with teachers if you send a message to them that you trust them. That makes ironing out the inevitable kinks easier.

Lindsey Nebeker
nakedbrainink.com

I wish I had known not to be ashamed to ask for accommodations and support during my school years. I had transitioned from special education to a typical classroom by the First Grade. Once I mainstreamed, my parents were hesitant to disclose my autism diagnosis to the schools. I was enrolled in private schools, which (at the time) had more flexibility in whether to accept or refuse funding extra services for a student with disabilities.

At the time, I was also very secretive about having a disability. Almost no one outside my family and early intervention team had that knowledge. I was afraid and embarrassed to admit I had a disability and that I could have benefited some additional services. It wasn't until after graduating from college that I became more open about my disability.

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I skipped 7th grade, which happened to be when sex education was taught at my school. However, I don't think I missed out on anything. The sex education curriculum tended to be more focused on biological information (anatomy, etc.).  The sex education curriculum included safety and protection, but only addressed the 'black-and-white' (or obvious) indicators to watch out for. When it comes to sexual abuse, there are often several 'shades of gray' that kids and adolescents need to watch out for. I wish instructors would understand how important it is to address these 'shades of gray.' It is especially difficult for students on the autism spectrum to naturally pick up on these 'shades of gray' without being explicitly taught what those 'shades of gray' are. It may not prevent all instances of sexual violation to autistic individuals, but it can certainly reduce the incidents.

Kristen Spina
kristenspina.wordpress.com

The one thing I wish I had known is that it would have been okay to wait another year before my son started kindergarten. I sometimes think that if he were a year behind -- going into fifth grade instead of sixth -- so many of his challenges would have been, well… less challenging.

He has been a solid year behind in reading, in math, socially, since he started school -- as the years tick by, I find myself regretful that we didn't slow it down when he was younger, give him a little extra time to cement his foundation. But I wasn't advised to do that, and I didn't even really know it was an option. The school wanted to promote him, to get him into kindergarten and get his services in place, they kept insisting he'd catch up by third grade, but honestly, how could he? Every year the work got harder and the kids moved faster.

The notion of success, or being successful in the classroom, has been hard to pin down for him, and considering that, I think the better thing for us to do would have been to wait it out a bit, to give our son a little more room to breath. He's had to work so hard for so much, and there is nothing we take for granted. I simply wish I could have given him more time. Maybe then it wouldn't have been so hard, maybe some things would have come easier -- he might have been in a class that spoke more to his developmental age, rather than his actual age.

In the end, I have no doubt he'll find his way. I just wish that back then, in the early early years, I had had a better understanding of "in his own time, in his own way..." The truth is, I really don't know if it would have made a difference, if it would have truly been better for him in any way, but I have a feeling it would have.

I know that when it comes to the future, that is the one thing I think about most -- the freedom to learn at his own pace -- even if that means his path is not on the college track or within the boundaries of what so many of us think of as academic success.

And, perhaps on a lighter (shorter) note:

I wish I had known that thousands of hours and countless dollars  in OT still would not guarantee that my son would have legible handwriting and that ultimately, legible handwriting was a superfluous goal because in the end, the only thing that mattered (as he hit 5th and 6th grade) was that he knew how to type. With changes in technology and the demands of the classroom heading into middle school and high school, the only goal we should have been concerned about was typing. I'd like to have all that time and money spent in private OT back, or at least have had the foresight to insist that his time there was better spent.

Liane Kupferberg Carter
Columnist, Autism After 16
www.autismafter16.com/users/liane-kupferberg-carter

When our son entered our local public high school, teachers and administrators said that he was "unteachable" because of his behaviors in the classroom. Even though he had been teachable all the way through the local elementary and middle schools. High school administrators refused to work with his previous teachers at the middle school, for reasons too complicated to explain here - turf, ego, etc. --  even though previous teachers understood his learning style, and knew how to manage his
behaviors.

We knew that he was legally entitled to a Functional Behavioral Assessment (FBA), even though no one at the high  school suggested it. We had to insist on it. Unsurprisingly, the outside professional who came to observe him told the high school staff that the problem was not with our son; it was a combination of inappropriate curriculum and teachers who were unused to teaching students with autism. I learned the hard way how imperative it is that teachers communicate with each other.  It seems so obvious, but often it doesn't happen, especially when a child changes buildings.  No child is unteachable; don't let anyone tell you otherwise.

Friday, August 24, 2012

Why Autistic Students Need Autistic Role Models

How many autistic kids are truly supported in school? How can we help students avoid failure? And how do we determine what really are best practices for autism and learning? We talked with psychologist Dr. Cynthia Arnold of the Portland area's New Leaves Clinic, Autistic self-advocate Karla Fisher, and Tasia, the parent of 14-year-old Nick, about the specific strategies they used to help Nick transition from educational crisis to classroom success -- including the importance of getting autistic perspectives on environments and supports for autistic students, and for those students to have autistic role models. (Nick gave permission for this interview to be published, but chose not to participate.)

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Tasia: Nick is 14, and just finished the 8th grade. He loves science of all kinds. He also loves nature in all of its forms, especially reptiles -- the other day he told his mother he wants to be a herpetologist when he grows up (the first time he's ever talked about what he wants to be when he grows up). His latest obsession is riverside fishing for bass and trout. He even taught himself how to gut and cook a fish.

We were struggling with his behavior. He was a super-anxious kid, and was getting in trouble at school nearly every day, plus constant meltdowns at home. We were at the end of our rope: we didn't know how to parent this kid, we did not know what else to do for him.

We had gone through a couple of therapists, but they weren't helping, things were not working. Dr. Arnold had actually been recommended to us a couple of years before, but I didn't want to drive that far (45 minutes each way, plus traffic). In the end it was so worth the drive!

Dr. Arnold: Nick had a first, full battery assessment with another psychologist in 2006, when he was eight. That person diagnosed Asperger's, anxiety, and sensory issues, but was wise enough to say they thought it really boiled down to Asperger's in its different forms.

I met Nick in October 2009. I have extensive training in behavior management and the neurological issues causing these challenges, and even for me Nick was very challenging. He was a young man who had experienced chronic failure in the classroom and at home which had resulted in severe mistrust and emotional regulation problems. Between the anxiety and failures, it was too much for Nick to handle. There was nothing left to give by anyone in the family, everyone was completely maxed out, everyone was walking on eggshells. I wasn't sure that, ethically, I could teach his family how to manage his behavior, because of the risks involved in trying to do that within a home setting.

Tasia: It was like living in a minefield, Nick had violent outbursts and was constantly exploding.

Dr. Arnold: At this point, Nick's parents thought he only had one emotion, which was rage. That's when we brought Karla in. Because even though I have tons of experience with Asperger's and developmental disabilities, and I love the extreme kids, it was very clear that Nick had zero interest in listening to me -- because I couldn't possibly know what he was going through, not being ASD myself; which was fair.

My concern with Nick was how severe the problems were, and that he needed someone who was ASD to help him understand that he was okay, and that he should accept help from parents and therapists. My challenge as a therapist wasn't that I didn't know what to do, it was that I didn't have any way to get him on my team. When I found Karla, I said, "I just need someone with ASD to tell Nick that he can be an adult with ASD, and it's going to be fine."

Tasia: Nick said to me, between our meeting Dr. Arnold and finding Karla, that, "If I have to see a therapist, I want one who is autistic like me." So I said, "Think about that, Nick -- do you want to be a counselor when you grow up?" And he hung his head and said, "No, no I don't" and you could see in his mind it wasn't the kind of job he was cut out for or the least bit interested in. We realized that the people society says are the most qualified to help him are the people least equipped to understand him. And then, enter Karla -- just as he was asking for a mentor who has autism.

Dr. Arnold: I was not even remotely offended when Karla came in and did a better job than I could with Nick. That was the whole goal. Many ASD kids immediately relate to me because I speak in a factual, non-emotional, logical manner. However, that was not the case with Nick. Nick's parents and I were very grateful that Karla was willing to spend time with Nick.

Karla: When I started working with Nick, I was still working through accepting my own diagnosis, what it meant for me -- that I could be impaired yet as successful as I am as a senior program manager at Intel. I did not accept my own diagnosis cheerfully -- label acceptance would have been easier for me without all the "severely" stuff attached -- the doctors all assured me that I was severely affected. But regardless, I knew that I needed to help other people, to share my gifts, to heal myself and others. (I match best with the "severe kids" versus the nuanced challenged ones; parents should match autistic adults as closely as possible to their kids.)

I was unsure that I wanted to work with a female doctor as I typically do not get along with females, but when I first met Dr. Arnold, she was very humble and we got along well -- there was a lot of passion and concern for the kids in her care, which is why I agreed to work with her.

Dr. Arnold: When Nick started working with me, he didn't know any other people with an ASD diagnosis -- though he tended to gravitate towards kids who were similar to him. He was still, at that point, not entirely convinced about his label. This isn't new; trying to convince people with Asperger's that they have Asperger's is one of the biggest challenges I face. They actively fight me on the label due to this misunderstanding of what ASD is neurologically.

Karla: That is exactly what I did too (actively fight my label).

Tasia: When Nick met Karla, he was not fully accepting of his label, even though we had been trying to help him with it for two years. He still didn't understand what it meant, still hadn't met anyone else on the spectrum.

Karla: When I met Nick at his house one evening, he seemed like a perfectly normal kid and working with him was easy -- I thought his family and Dr. Arnold were the wacky ones. So even though Nick and I were not entirely accepting of our diagnoses, we decided that we were going to go against the world together.

Dr. Arnold: Often when Karla meets the kids I'm treating, she will say that some of them are too different from her for her to help (i.e., have too many abstract or nuanced skills that she does not). When I introduce her to a more extreme teen she thinks they're "normal." It's not acceptance, it's familiarity -- it's normal, comfortable. She insists that Nick is 100% normal, and keeps telling him so (which Tasia very much appreciates).

Karla: Nick and I had several meet-ups, we bonded quite well. Yes, he had challenges but they were honestly not that bad in my eyes. I assured him that his issues were not about autism but about how people were treating him. He was very relieved to find someone who finally just got him.

About this time, I taught in his classroom as a President Obama-launched Engineering in Schools initiative -- and for the first time I recognized the depths of hell Nick was going through. Some of this understanding was because one of the ways I had tried to disprove my own label was by signing up for social skills classes, thinking I could "nail" them and could show everyone else that they were full of sh*t -- but quite the opposite happened. The psychologist said that people who were as affected as me generally end up in institutions! Whenever I would go to these classes, which were one hour per week, I would require 1 to 4 days to recover from the failures and sheer mental exhaustion I would experience there.

When I went to Nick's school, the sensory nightmare of it is almost impossible for me to describe adequately. There was no sensory friendly place for Nick to eat lunch. The cafeteria's ambient decibel level was 95. To top it off, this very bright child had a full-time aide, and a locker right next to the cafeteria in full view of bullies. He had 4 - 5 hours of special ed each week, including speech therapy and social skills in addition to his regular class load -- yet no accommodation for his sensory needs.

Then I had an interaction with Nick's special ed teacher that still gives me PTSD today -- the teacher wasn't taking my queries about the utility of Nick's speech and behavioral therapies seriously, she was using language with undercurrents that I did not understand. The teacher ended up getting very angry with me and Nick, then Nick defended me and got very angry with the teacher, and there was an altercation where people ended up on the floor -- and if I hadn't been there to tell Nick's side of the story, he would have been suspended again

I actually have more sensory issues than Nick -- and Nick always protected me, he has huge empathy for me because I'm more disabled than him in that regard. I suffered so badly because of my sensory issues when I was at the school that Nick said he would come get me for lunch -- and then his teacher wouldn't let him, and that's what started the fight. The providers were treating me like a provider, not a person with ASD -- they truly did not understand that I could not just turn my abstraction/ASD ability on and off at will. They didn't understand that I could have the ability to teach, but could not handle the peripheral social and sensory aspects of being in the school.

Tasia: Nick had been home-schooled before coming to his public middle school for seventh grade, and before that he had been in a Waldorf school which is very, very different from a public school setting. So this was really his first experience in a typical school environment. I had wanted the school to evaluate Nick for an IEP right away, but the school kept putting me off -- they thought we were trying to mainstream him and treat him like a neurotypical kid. It was at least November before they even started the evaluation process -- that is when they met Karla, in the middle of the first IEP, which wasn't working out. And Karla visited the school and was able to give lots of insights why -- things Nick couldn't articulate, things the teachers weren't being entirely open about, possibly because they didn't completely understand autism and just thought Nick was a bad kid.

Karla:To be entirely fair, I feel like the people at the school had a context for everything that was happening, and for their way of thinking that context was probably right. But when someone is more severely affected by autism and can't process so much stuff, and when their abstraction is so low, it becomes an entirely new context. And schools don't really get this. This is why any kids with needs beyond what I call "nuanced challenged" autistic are pulled out of schools. The schools are not equipped to deal with autism as a whole or from this perspective.

I had to quickly ramp into the IEP and 504 process, and did what "any good autistic person would do," which was to research like hell and memorize all the rules. And I thoroughly scrubbed Nick's existing IEP, which was approximately an inch thick and filled with ambiguous statements and abstractions and just plain detritus. I coined a phrase: "the quality of an IEP should be measured in WTFs per page," because that's what I kept writing next to every other paragraph. It was nothing like what the law intended, it was not measurable; it had a lot of statements about his mixed social behavior and nothing about its root cause.

During the next actual IEP meeting, there started to be back-and-forth BS about social skills and what the "problem statement" was. So I stopped the meeting, and went to the whiteboard and did what I do as a program manager at work, which is to align teams of divergent thinkers. To me the root cause and the real problem statement was clear, very black/white, but the team was still focused on irrelevant stuff like eye contact, inappropriate behaviors, social skills -- whereas I was worried about the kid who was having four or five violent meltdowns per week. I know first hand the heath risks involved with this much anxiety and I was shocked that these professionals were more worried for their rules than for his physical health.

So, I made his IEP very explicitly say that his measurable goals for the rest of the year -- and this is when they had eight weeks left for the remainder of seventh grade -- was to have one or fewer violent meltdowns per week, and the argument I gave was that I was worried for his physical long-term health -- I saw a child in a dangerous place and made sure the team saw this too. Meltdowns can kill, from the anxiety.

Everything that the school's professionals tried was behavior-related, and it wasn't working. So we implemented a root cause approach instead. I asked everyone in the room who had worked with Nick if there was anyone there who didn't believe that at his core Nick was a good kid and wanted to succeed. And everyone raised their hands. So, working from that point of trust, I asked everyone to support efforts to help Nick succeed, items that empowered him to make good choices.

It took a lot of convincing the teachers and parents that less is more. Nick didn't need a full-time aide, he needed alone time; so they eliminated his aide. They implemented accommodations: he got to use a cell phone to call his mom to come get him if he thought he could not avoid a meltdown, he got to have a truly sensory-friendly room -- and not just the Health room when sick kids weren't using it.

On Nick's side, I set up a one-page behavior plan, very detailed, with charts, and actions and consequences that he could actually comprehend, versus an inch-thick packet of words. The end result was that he had eight weeks with zero meltdowns.

Tasia: And at home Nick had a different behavior motivation plan going on based on the behavior plan, with the goal that he could earn a pet snake -- a Dumeril's boa. Which also helped him with the motivation for school. The result was that Nick had zero meltdowns during those last weeks. He instantly went from being a misunderstood, odd child with behavior problems to being a supported child with ASD.

Karla: And more of a motivation for him was to prove everyone wrong -- that was more motivating than the snake. But just to prove it, not to show off about it. He would have been able to sass off to the special education teacher who harassed him and said, "I told you so," but since he is a good kid, he didn't do it -- even though he practiced doing it!

Dr. Arnold: The end goal when Karla came to talk to me was that the IEP be boiled down to two pages. One of bullet points of actions and effect so that Nick absolutely understood it, and one very clear chart for the school to follow, and that's it. What was beautiful here is that everyone could understand it, could have a copy, could follow it through, and could easily recognize when the goals were reached.

Examples include a sensory friendly room that Nick could go to for a certain amount of time if he needed to. If he couldn't calm down, he was allowed to use his cell phone to ask his mom to come get him, no questions asked -- which Karla likes to call 100% advocacy, and Dr. Arnold likes that -- because if you believe these kids want to succeed, then you understand they won't abuse this policy -- and they don't.

Tasia: Nick was also given the privilege to raise his hand in class as a stop signal. He would frequently get overwhelmed, and stress in class. He would ask a question with good intentions, the teacher would answer it, and then would say, "Oh, and well, also..." and try to tie it to something else, and Nick would get freaked out, because he needed her to stop after his question was answered -- needed the verbal input to stop. So there was a lot of anxiety. And that was a very hard thing for them to accept, because it's very humbling to simply stop talking when a child silences you -- because that's contrary to what schools are about in terms of controlling children's behavior. They had to be talked into trying it, as they were worried that he would abuse it, but he never did.

He was also given the freedom to leave the class if he needed to, to avoid a meltdown. He did that regularly, went specifically to his quiet room so everyone would know where he was -- and he never abused that either, which shocked them, but worked beautifully.

He took a lot of breaks at first -- he needed time to adjust, was coming off a lot of anxiety, stress, needed to adjust to and trust the new system. And it didn't work perfectly at first, sometimes the conference room he was assigned as a sensory-friendly place would be locked.

Another accommodation was to get him out of homeroom, assembly, anything that did not directly lead to his diploma. So he had a short day, a five-hour day. This is about understanding what Nick needed to succeed in an inclusive environment, as opposed to making him fit into some other person's idea of an inclusive environment.

So, after having multiple violent meltdowns per week during most of seventh grade (prior to the final IEP that we used for the last 8 weeks) he only had three instances of violence/behavior problems during his entire 8th grade year. I would not call them meltdowns but they were problems that called for specific consequences as per his behavior support plan -- the chart Karla created.

What Karla gave him was a toolbox, something he didn't' have before. She gave him context. As Nick started to use the tools, he felt empowered instead of disabled or pitied. As his self esteem grew, so did his other skills.

Dr. Arnold: I think the other critical part was that Nick needed to meet someone like himself, he needed a role model.

Karla: When I first met the IEP team, the school psychologist had Nick on a modified diploma track, and did not ever expect Nick to graduate with a regular diploma.

Tasia: They thought he'd go to jail, to be honest. They'd written him off.

Karla: But this year, he's on track for a regular diploma; he's got straight A's. In fact, all A+'s and one A. He's on track to be the valedictorian. Because of the fact that he's understood, and he has self-esteem, he has the tools he needs to succeed. I think he's brighter than his teachers, but they couldn't see that because all they could see was behaviors -- and behavior out of context.

Dr. Arnold: And this is in a school that is acclaimed for having a program that works with ASD kids, which is why it's more shocking; other districts model their classrooms on it.

Karla: I was invited to this school's special autism program for eighth grade to see what goes on inside, to see how it would work for Nick when he transitioned to eighth grade. What I saw shocked me: the walls were covered with materials about doing social skills and how wrong I am doing it: "20 social rules to remember before I have a conversation," etc. -- everything screams "you're disabled, you're disabled," without a single role model, nothing for me in that room -- and they were excited for me to come see it! I couldn't have lasted there for more than two minutes. In fact, most of the material I use in my presentations that makes fun of today's ASD classrooms is from this class.

I was very, very sad. I advised that Nick not transition to that room -- and part of his new IEP became that he didn't have to be in that room, or talk with its resource person more than 15 minutes per week -- and then only at his discretion, his initiation.

Dr. Arnold: Karla and I have spent a lot of time visiting ASD programs -- me as a Ph.D. who loves ASD, and Karla as someone who HAS ASD. We understand that the people who create these programs are trying, hard. But before I worked with Karla and was able to see through Karla's ASD perspective -- before I asked an ASD person what they thought -- all of my training would have led me to create almost exactly the same kind of programs as the classroom we did not want Nick to be in. Now I can understand that all the training in the world won't help me see through ASD eyes -- I have to ask someone like Karla. That's the reason I work with Karla as much as I can, because a program is only as good as an ASD person can function within it. To date, Karla and I have never been to an ASD program that Karla could function within.

The message I want to get out is that for students like Nick to succeed, they need the following:
  1. To be matched with ASD role models or at least to be able to name three of them (they must know that people can and do succeed even when they are autistic). 
  2. Their programs should be evaluated by ASD adults.
Karla and I would like to get these types of programs rolling all over the United States. We know so many adults who can just walk though program buildings and tell you the simplest things that can be unintentionally hurtful to students, for example that there's off-gassing, or that the toilets flush so loudly they trigger panic attacks!

We do not yet have the infrastructure to make a large scale program like this work but we do have best known methods and can talk to others willing to try about how to connect.

We need autistic adults to come in, and help parents and educators realize how these programs can be improved. We need to work with, not against, ASD.

----

More information about Karla's advocacy and strategies can be found at Karla's ASD Page.

Wednesday, August 22, 2012

Starting Third Grade

Judy Endow, MSW
judyendow.com

Too much new
                  for back to school
                                    is why I just                    don't like it,

                  though
                                     each new thing
                                              all by                    itself

                                                          is entirely
                                                                            acceptable.


New shiny shoes
                  I do so love
                                     new ribbons in                my hair

                  a freshly pressed
                                     brand new pink                  dress
                                                  Oh       .......


                                                           ain't I
                                                                            debonair!


My satchel packed
                  with all new things
                                     with all the stuff I                need

                  sits on the floor
                                     next to the                    door
                                               just waiting

                                                           for me
                                                                            to leave!


New class lists
                   posted on the                 doors;
                                     the students find their                names.
 
                   They take their                   seats
                                     and wait to                   see
                                                  what will

                                                        this brand new teacher
                                                            say!


"Unpack supplies.
                   Get settled in.
                                     My name is on the                   board."
                   On and on
                                     her voice keeps                   speaking
                                                   way much

                                                           too many 
                                                                      words.


Her voice           plows on
                   it will not                   quit.
                                     Words heap up in a                pile,
                   while yellow                   chalk
                                     adds                to the                   talk.
                                                           School

                                                                just ain't
                                                                             my          style.

Time for           recess.
                   Go                    outside.
                                     New           playground has no                shade.

                   Kids                    race about;
                                     they         run and                    shout.
                                                          At           recess

                                                                I might
                                                                               die.


I stand                  real          still
                   and close           my           eyes.
                            The           teacher comes           by         me.
                   She does           smell         nice,
                            but            I've           made up         my           mind.....
                                             I right now

                                                                  quit
                                                                             third grade.

----

This poem was originally published in Judy's book Making Lemonade: Hints for Autism's Helpers.

Monday, August 20, 2012

Scarred

Kate

We are scarred, we adults on the spectrum.

We are scarred, both inside and out.

Our lives are twisted paths littered with diagnoses. We have fought for years to get to where we are now, and still it isn’t good enough.

We are scarred.

We went to schools where there was no help. Sometimes we were shunted into special education rooms, or to the behavior-problems division. There we were taught that we were 'stupid,' 'retarded,' that we would never amount to anything. We were accused of cheating when we read so well but couldn’t write an essay, drew complex diagrams yet failed math. We were denied entry into higher-level classes because we didn’t appear to be smart or participating in class, and our minds thirsted in vain for more knowledge.

We went to therapies, all sorts of therapies. Look at this ink blot, what do you see? I see an ink blot. Hours and hours with workbooks and little faces -- this is what sad looks like, can you look sad? No, you are wrong, that is not what sad looks like. It does not matter what sad looks like to you, it matters only what it looks like to others.

You are avoiding the subject, the therapists say, over and over, you only want to talk about dogs and not your real issues. Why do you have such a problem with authority? Why are you so rude on purpose? Why do you like making people mad? Your whole family is in a shambles and it is all your fault.

It was all our fault -- our grades, our trips to the office, our parents divorce, our mother’s stress, our messy house. We didn’t know why, but it was all our fault, and the burden grew heavier as each year grew and we tried for independence and failed yet again.

We were drugged. Oh, we were drugged to the heavens. Every last tranquilizer that’s ever been known to man. Early SSRIs, late SSRIs. We gained weight, lost it, became hyperactive, slept all day, and still they kept changing them, trying to find the magic pill. They never understood why our bodies reacted so differently to medications than others' bodies did. They didn’t understand that our autism, even if they did call it that, wasn’t just in our brains, it is in our whole bodies, and that people on the spectrum have the distinctive tendency to react in unique ways to everything.

We were teased, taunted, bullied, punished. Verbal abuse was routine. We learned that we were Other very young, and that Other was bad. We started thinking about suicide before we knew what the word was. We kept swimming as hard as we could, but it seemed like it would be so much easier to just give up and let ourselves drown. The waves were always over our heads, always crashing down on any small gains we made.

Autistics on a whole have long memories. Too long. We remember standing in the fifth-grade lunch line and feeling that the world was crashing down. We remember running through the middle-school hallways and trying to avoid getting kicked. Our post-traumatic stress disorder, so common as to be almost routine in adults, wasn’t caused by any specific incident. It was caused by life, life itself, the endless routine of falling down and getting up and trying again only to fail again.

We are used to ignoring our own bodies. "These carrots are too spicy" we complained as a child, only to be told no, they were sweet, that the music wasn’t too loud, nobody can hear lights, what you are experiencing is invalid. We heard: you are invalid. You do not experience the world the same way as everyone else, and therefore, your experience is wrong. You learn to ignore the ever-present pain because nothing can be done about it, but then you have a kidney infection and others get mad at you for not noticing sooner. But why should you trust your body when it is always wrong?

We are scarred, and you who say we look so young, I remind you that we are old, and we are scarred, and we are delicate. We are prone to breakage. Anger, even the slightest bit of it, scares us because in the past, misinterpreting anger led to yelling and violence and punishments. We are prone to apologies for things we did not do, for whatever it was, in our past it was usually our fault.

They say that what doesn’t kill you, makes you stronger. If so, we are forged of steel and iron. We can deal with whatever life throws at us, we are used to managing on our own, but dammit, it is so hard sometimes. It is so hard trying and pretending and figuring things out all the time. It takes years of effort to understand, logically if not emotionally, that we are not stupid, we are not invalid, we have just as much a right to be accepted and loved as anyone else.

Yet even so, when we reach that point, even then we are still scarred.

You make an offhand remark, but it builds upon decades of insults and innuendos. You make a reference, and our minds go spinning backwards and we are re-living something that we wish we could forget. You say that we don’t seem autistic, and we want to weep, because maybe if we had learned to not be autistic sooner in our lives, we wouldn’t be so scarred.

Friday, August 17, 2012

I Can Do RAD All By Myself

Amanda Forest Vivian
adeepercountry.blogspot.com

I was born in 1988 to a rich white family on the East Coast of the United States of America. For those keeping track, I was diagnosed with PDD-NOS when I was nine and Asperger’s when I was fourteen -- but all that really tells you about me is that I was born in 1988 to a rich white family on the East Coast of the United States of America.

By the time I was 18, I had been undiagnosed many times by people both qualified and unqualified to do so; and after a brief flirtation with Autistic culture I soon succumbed to the implications of the types of praise and encouragement young disabled people often receive. When we succeed we’re told that we’re not really disabled or that we’re different from other disabled people. The idea of being a real average disabled person becomes unacceptable. Being approved of or getting the things that we want is associated with not being something that we are; so, growing up, we bury part of ourselves.

I grew up to be a buried young adult. When I associated autism with myself at all, I identified as “very high-functioning” or “someone who used to have Asperger’s.” I even wished there was a word for someone who was more high-functioning than Asperger’s, since I felt I was on the very, very mild end of that spectrum, almost disappearing into thin air. At the same time I couldn’t help feeling namelessly guilty and impaired in a lot of ways. I judged myself by different standards from most people, who I thought of as being basically more legitimate and better than I was; there was no real word for what I was, just a sense that people could see it on me and attempts to disguise it would be
thrilling but not permanent.

I experienced a lot of intense emotions, but ultimately calmness and joy, when I was around disabled people; so in college, I decided that I wanted to work with disabled people professionally. As I began to get experience doing this, I became aware of two things. First, I learned that I liked real average disabled people and would like to be one. I also learned that disabled people were often treated or judged in ways that didn’t make sense but were accepted as natural. Thinking about this was the first step to being RAD and, I guess, realizing what I was so guilty about.

----

A version of this essay was originally published at adeepercountry.blogspot.com

Wednesday, August 15, 2012

In Case of Emergency

Jennifer Byde Myers
jennyalice.com

iEmergency+ application
Create your own lock-screen
with important information.
I just got the paperwork from Jack's school to set all of our records straight for the next school year. I know... already, summer is flying by. I scanned through the printed information I filled out from last year and got stopped at that emergency contact section again. It is a list that really defines the borders of my close-knit community.

In an emergency, who can care for your child with special needs? Most of the time life goes along just swimmingly, but things happen; cars break down on the way to pick-up, I broke my leg once, we live in earthquake country.

I have a collection of people that I know can take care of my child and keep him safe. It's a short list, and I wouldn't ask many on that list to even babysit on a Friday night, but they are people who are smart, calm in an emergency, and most of all, I have spoken with each of them specifically about what would be required if they became the temporary guardian of my special needs kid. They aren't really big things, but they are extremely important, like "do not let go of his hand on a street" and "he must use a straw to drink." Basics, really, to ensure that he will still be alive when I come to get him later.

I am the emergency contact for several of my friends with kids on the spectrum, or for children who have physical disabilities. Maybe my friends figure if I've managed to parent my kids this far I might be able to take care of their child for an hour. It may seem strange, but I am honored to be asked because I know the faith I put in my people when I write down their names and numbers on the back-to-school papers and camp forms.

A few things we have learned along the way-
  • It's a pain to fill out all of the forms for camp and school, but this is one area you should not rush through. Make sure the information is correct and clearly written. If you have bad handwriting, use the computer and print out the information on a separate piece of paper. Aside from allergies to medications and seizure protocol, this list is the most important thing I can provide my kids' camp or school.
  • Have a quick conversation with anyone you put on your list asking their permission to be called upon. Go over any major safety concerns. If your child requires specific medical care, ensure that the contact understands how to do that procedure. I was taught how to change out a g-tube, had a spare tube, and had liquid formula at my house to get through a few days as the main contact for one family's child.
  • Determine who is on the emergency contact list that is local and can most easily care for your child in a pinch; this is the short list for quick pick up. Get their correct phone numbers and email addresses, and if there are two caretakers in a family, and either could help, write down both names so your child can be released to their care.  Remember to include area codes with all phone numbers; school, work and home are all in different area codes for us.
  • Put down any relative that you trust on that emergency pick-up list. If there is a real emergency, like a major disaster, it's hard to say who will be available to help. You may not need to provide detailed contact information for every person, but schools will not release a child to someone who is not on the pick-up list. If I need to send my sister to any camp or school, we both know that she is always allowed to pick up my kids, even though she lives 200 miles away.
  • Create an online document, using something like Google docs or Evernote, or even an email you send to yourself, with all of the information that you give to school or camp. If it is online you can access it from anywhere you might need it. It will also make it easier for next year and the year after that.
  • Print a copy of the emergency contact information and post it inside a kitchen cabinet or wherever you keep your family calendar and planning information. This list doubles as a contact list for babysitters or other professionals who may work in your home.
Having an emergency contact isn't just for kids either. Autistic adults, especially those with health issues, can benefit from having an emergency contact who understands their particular needs.
  • Local family or your spouse are probably your first choice as a contact, but a neighbor, coworker, or friend could also be a person you can call upon if they have the right information about your needs.
  • Use technology to your advantage. In stressful situations, it's not uncommon to lose communication skills, and technology may be able provide information for you. Both Android and iPhone users can use applications that have emergency contact and medical information. On one iPhone app,  iEmergency+ you can create a lock screen wallpaper with an emergency contact number and a line of information, which is a great place to share significant allergies.
  • Outline clear instructions for medical needs, like seizure protocol--call after one minute, call after two minutes, you are alert but non-verbal during seizures, etc. This can give even a stranger better information to use when trying to determine what level of help you need, and whether they should call 911 (in the U.S.),  or emergency services.
  • Attach your protocols for seizure, migraines, or allergies to your health insurance card, and ensure that your contact's name and number are also on the card. Hospitals look for insurance information. (While you're at it, make sure you have a current insurance card if you are lucky enough to have health insurance.)
  • Keep current contact information at your office, in your car, and in an accessible space at home. Make it easy for people to help you by listing allergies and current medications.
  • And you probably already know that the wrong help may be no help at all, and may even be worse than not having someone at your side. If you have local family that creates more drama and anxiety than you can handle on a non-emergency day, consider carefully whether those people should be on your short list. If you don't already have an emergency contact who "gets" you, make it a goal this year, to get an emergency contact that makes you feel safe, and understands your needs.
And perhaps the one thing we can do for each other, if you think you can help, is volunteer to be an emergency contact for another family or person. When Jack was in early intervention I remember feeling that I couldn't possibly ask other parents of special needs kids to help me because I knew how many things they were already juggling. Today some of those families are on the short list of who I know would always be able to keep my kids safe.

Call a friend, and say that you are happy to be on their emergency contact list, if needed, and make one thing easier for that person.

Monday, August 13, 2012

Someone Who Moves Like You

Julia Bascom
juststimming.wordpress.com

Buckle up kids, because this gets long and personal.

So, a long time (~seven months) ago, in a galaxy far, far away (rural New Hampshire) there lived a sad little girl (or KICKASS ADULT) named Julia who just so happened to have a friend named C. C and Julia had spent the past several months talking too much altogether about the TV series Glee, and C had begun to push for Julia to add a second show to her plate. Some brightly-colored sitcom about derelicts going to a community college.

And Julia was skeptical, but C was persistent, for she knew that if Julia liked the first two minutes, Julia would have a new favorite show. See, C knew something that Julia did not.

C knew that Abed Nadir existed.

Now, there are a couple of things you, gentle reader, must know about Julia in order to appreciate what happens next. First, you must understand that, ever since she had been born and maybe even before, Julia had been autistic. And second, you must understand that, because of this, Julia had spent her whole life watching and learning stories where she had no part, no point of entry, and no value. Julia was trained to imagine herself in stories as someone she was not and could never be, and to define the story of her own life in terms of how it failed to be reflected back to her. And sometimes, most of the times, Julia forgot that she was a person. Stories are important, and she didn’t have one. You are a mistake isn’t a story. It’s barely even a sentence.

I must warn you now that this is not a story of how C or Dan Harmon or Abed Nadir or even Julia herself saved or healed Julia. It’s in the script, but Julia wouldn’t have a voice in any of those stories, either. No, gentle readers and vicious tumblr-ers, this is a story of what it means to start a new story and see on your screen, for the first time, someone who moves like you.

Do you understand what that means?

It’s probably not something you’ve ever really had to think about. But how someone moves is the first thing telling you whether or not they might be able to be you, and you them. And for the first time in Julia’s life, she looked at a character on television and saw a yes.

Abed Nadir walked onto Julia’s laptop screen, and nothing and everything changed.

For the next seventh months, there was a lot of CAPSLOCKING IN GOOGLE CHAT at C about Community and Abed Nadir, but very few words elsewhere. Which was odd, because when Julia liked things, she tended to talk about them too much. This was one of many things she and Abed had in common.

Except, here’s the funny thing. Abed said “I just like liking things,” and it wasn’t just not-punished, it wasn’t just okay -- either of which would have been remarkable and unbelievable -- no. It was good.
And Julia, who had endless words for a great many small and unimportant things, couldn’t say anything more about Abed beyond he moves like me.

Abed Nadir, you see, is an autistic character.

There’s a difference between TV Autistics and autistic characters on television. TV Autistics -- Bones, House, Sheldon, Sherlock -- are caricatures, and, not coincidentally, almost all fan-diagnosed. They are socially awkward/anti-social/socially maladapted, eccentric geniuses free of any serious adaptive functioning limitations, motor issues, sensory sensitivities, or language differences, able to manage independently in all major areas of daily living, with a bonus side of savant skills and the empathic range of a rock. They’re awesome, but they’re a stock character, and they manage to simultaneously hint at the autistic experience without actually meaning it.

It’s like that poster about gay subtext in popular shows (House, Sherlock, Rome) that was going around a while ago. The irony being, of course, that for shows that are “so gay,” they're actually not gay at all. The people in charge have found the perfect ratio of homoerotic subtext (all of it) to actual gay characters (none of them) to keep the fangirls creaming their pants and the money rolling in. No one involved has any intention of meaningful inclusion or exploration. You avoid any potentially unpleasant consequences, because the choice to have a gay character was never actually made.

It should be noted that autism isn’t the only reason Julia grew up without People Like Her on television, and it’s not even close to the only reason she has a Thing about stories. And that’s the curious thing about these TV Autistics -- someone who’s watched one of them in action is much more predisposed to assume that since Julia is autistic, and since she’s got this extended metaphor (bonus points if you say perseveration) about stories going on, stories must be her Special Interest, the framework through which she filters the world, the poor half-human thing.

And they are, but that’s because Julia is, shockingly, a person at her core. And people need stories.

Which brings us back to Abed.

It’s entirely possible Julia over-identified with Abed, just a tad. Which struck her as first a bit odd -- they’re nothing alike, Abed thinks The Breakfast Club had a plot and likes falafel and his mom had the decency to leave -- and then as more than a bit precarious. This wasn’t supposed to happen.

(Somewhere, fiddling with her contacts, C arched an eyebrow and said “it wasn’t?” and Julia cyber-kicked her.)

Abed Nadir walked around like a bird or a giraffe, and he couldn’t do thumbs-up and he talked too fast and knew too many things and he was sharp and suspicious and easy and trusting. He did things that were simultaneously uncanny/creepy and sweet/thoughtful, and he couldn’t do bills or read clocks but he could tell psychiatrists to fuck off and he could fight with his best friend when his best friend tried to take charge, and he was jealous and sharp with his crushes. He had friends and private worlds, and all the scars that come from growing up a mistake, and things were imperfect and messy and painful and visceral but he always emerged okay.

Abed Nadir said “please don’t do a special episode about me” and Jeff Winger promised he “wouldn’t dream of it.”

And then he told Abed to pick one reference, and Abed picked Sixteen Candles, so they sat on the counter and ate chicken.

(And Abed didn’t mind who he was kissing so long as he got to be Han Solo, and also he delivered several babies and got to be the good cop and the bad cop and used his diagnosis to get rid of an unfortunate lab partner and took advantage of a stranger in a bar’s patience so he could talk about Farscape.)

And stories are a scary and messy business, full of magic and demons, taunting possibilities and rules-that-aren’t, things we can’t have and altogether far too many opportunities for a sad little girl’s heart to be ripped out of her chest, and Julia kept watching, every week. And you must understand that asking Julia to pick one Abed moment is liking asking Abed to pick one reference.

You must understand that one story is infinitely bigger than zero, and it may still be very small and nowhere near enough, but it’s something.

And yes, her heart was eventually forcibly extracted when Dan Harmon broke his promise and Virtual Systems Analysis was the dreaded Special Episode. And Julia remembered how to breathe, and stitched herself back up, because she hadn’t really needed that heart, anyway. And when it turned out that someone else would be in charge of Abed next year, she remembered what she had always known to be true about happy endings and said goodbye, mourned more than she had for any corporeal person (which was still not very much,) and folded away that part of herself and went back to not existing.

But for seven months.

For seven months, she had.

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A version of this essay was previously published at juststimming.wordpress.com.