Not Otherwise Specified

Why Autistic People are Left Out in the Cold in Communications: The Cultural Iceberg

I will admit to having a bit of a fan-girl crush on Edward T. Hall (may he rest in peace.) His work in cultural communications fascinates me, and his Cultural Iceberg has given me incredible insight into why we autistic folks have such a tough time communicating and otherwise interacting with our typical peers. 

Edward Twitchell Hall was a cultural anthropologist who specialized in non-verbal communication during WWII. His work spans beyond the Cultural Iceberg, and he explores how time and space affect culture as well - all insightful topics to explore if one is so inclined. The Iceberg is particularly salient to autistic communication and culture, though, because in it, Hall talks about how culture consists of surface things that we typically think of making up a culture: food, language, fashion, literature, dances and other performances, festivals, holidays, and more.

However, there is a Deep Culture, that, according to Hall, can only be learned by living in that culture, and absorbing the culture through non-verbal observation. Things such as: communication styles and rules, notions of courtesy and manners, friendship, concepts of fairness and justice, self, attitudes towards various people in our lives, approaches to religion, decision-making, problem-solving, courtship, and much, much more. For a full list, and more information on the Cultural Iceberg, see Hall's book Beyond Culture or check out this blog, How to Develop Your Cultural Intelligence. Here's a picture from that blog:

When I first saw the Cultural Iceberg, I was very excited, because the things listed in the Deep Culture area are the exact things that autistic people "get in trouble" for all the time - we experience misunderstandings and miscommunication around these things regularly. Indeed, some are even used by diagnosticians to determine autism - "failure to make eye contact" - "deficits in pragmatic language" (a fancy way of saying that we use conversational language in different social situations differently than our dominant culture.) 

Indeed, when one looks more closely, many of the current diagnostic criteria for an autism diagnosis are culturally constructed, and, if put through the sieve of Hall's iceberg, may start to look quite a bit like a different culture, rather than a disability.

Note: I am not saying autism isn't disabling, it is. In addition, I believe that there are many parts to autism that are not part of the diagnostic criteria that should be, and are actually physically disabling features. As an example, Sensory Processing was just recently added as a diagnostic criteria, after years of autistic people telling researchers it was part of autism. We need a lot more of that type of thing, however, that is a discussion for another time. 

Back to the iceberg! 

So, why do autistic people vary from our dominant culture so much in so many of these areas? The secret lies in Edward T. Hall's specialty - non-verbal communication. As a group, and on a spectrum, we as autistic people have varying levels of difficulty decoding non-verbal cues. We grow in our ability to do this as we age, as all people gain abilities as they age, however, our younger years are typically spent not picking up on all the non-verbal cultural cues that our typical peers are easily adapting to. 

This is the reason why people think that the solution is to give us social skills classes. It seems logical on the surface - if someone doesn't naturally pick up on culturally embedded cues, teach them didactically! Some autistic people are even hungry for this information - they want to know the secrets. There's a big, big problem with teaching social skills, though. People who work with autistic people already know this problem - we have difficulty "transferring skills across settings." They think it's because we are so rigid, or can't adapt when one thing is different, but here's the real truth:

Cultural expectations are different in every classroom, every boardroom, on every team, in every group of friends, in every family, in every city, in every state, every country. 

And, we do not have the inherent ability to "read" those expectations the way a person without a non-verbal learning disability does. And teaching us "social skills" in one setting does little to nothing to help us in a different setting, i.e., next door. Or, please help us, if we move to a different city or state. 

So, we make mistakes. Pretty frequently. And, depending on the person and the culture, those mistakes can be held against us for a long time, or have serious consequences. 

It doesn't need to be a grim picture, though. There are two things that will brighten the communications picture for autistic people, and bring us in from out in the cold:

1) Teach us to advocate for ourselves. "I don't always know the implied meaning of things, so if there's something I'm not getting, please say it directly to me." and "Sometimes I can be very direct, and I never mean to offend. If I say something that you find abrupt, please ask me a question about it."

2) Teach others about our culture. Communication will always be a two-way street, and other people can learn to add more direct information around their implied meaning if someone isn't picking up on it. I believe this should be part of every communications class, every teamwork class, every lesson around cultural inclusiveness.

So, for example, if you don't want to hang out with someone after work, and your usual method of saying, "I'm busy" is met with continued requests to get together, be more direct. Be direct and kind. "I really appreciate that you want to spend time with me after work, and I think you're a nice person. I enjoy talking with you sometimes at work, but I won't ever be able to spend time with you after work. Please don't ask me any more." To some people, this may feel too direct, however, it may be the nicest thing you can say to someone who needs to have all the information. 

Your take-away from Hall's Cultural Iceberg is this: if someone (anyone, you don't need to know their diagnosis) is communicating or acting in a way that is different from your cultural expectation in any of the Deep Culture areas of the iceberg, take a step back and ask yourself if they might be coming from a different cultural perspective than yours. Instead of becoming upset or offended, ask them a question, or do something to make yourself feel safe. I have a friend who says, "manage your stories," or manage what you are telling yourself about that person just because they are acting in an unexpected manner.

Edward T. Hall - thank you. 

Outrageous

Imagine you have Diabetes. You were diagnosed a few years ago, after struggling with baffling symptoms for quite some time. After your diagnosis, and treatment, you began to feel much better, and you are so grateful that you were finally able to find out what had been causing you difficulty for such a long time. Now, you work hard to learn more about Diabetes, and to follow your doctor's advice. You stick to your dietary recommendations, you exercise regularly, and, if needed, take the appropriate medications.

You have a doctor's appointment coming up, so you gather your blood sugar data from the past few months, and look forward to going over your case with your doctor. When you meet with her, she tells you, "I have some news for you. You no longer have Diabetes." You are pretty excited, because you think that perhaps your hard work has paid off and you have beaten your blood sugar problems. The doctor goes on to explain, "The medical definition of Diabetes has been redefined. Most people with blood sugar problems still fit that definition, but people like you, who are careful to eat properly, exercise and take their medications, no longer fit into that medical definition. So, according to the new definition, you are no longer Diabetic."

"What does this mean to me, Doctor?" you ask. "Can I stop taking my medication?" "Do I still need to be careful with my diet and exercise, or I am cured of my Diabetes?"

"Well, you still will need medication, and if you aren't careful with your diet and exercise, you will most likely get very, very sick, and could seriously damage your internal organs, so you definitely need to keep up on all those things." But, for medical purposes, you can consider yourself cured of Diabetes, since you no longer meet the medical definition of Diabetes under the new criteria.

"But, I can still see you, and my insurance will still pay for my treatment?"

"No, I am a Diabetes specialist, so you can't see me. You will need to see your General Practioner for treatment, since you don't have a particular disease, just some things that you need to watch. As long as you are careful, you are not that different from typical, non-sick people. And, no, your insurance won't pay for your medication anymore, because it's diabetes medication, and you're not Diabetic. I doubt that it will pay for nutritional counseling either, because you are doing so well."

"But doctor, I only found out about my Diabetes because my son was identified as pre-diabetic. You know, kind of a mild form of diabetes? Will people still be identified as pre-diabetic, and receive help for that? So that, like, future kids and families will get the help they need?"

"No, no, your son had a really mild case. Now, under the new definition, there is really no 'pre-diabetes.' Kids like your son will just have to watch what they eat, and be sure to exercise, and if they get worse, then maybe they will qualify for a diagnosis of Diabetes someday. Then they can get paid-for medical help. I'm not really sure how they will know to watch what they eat, etc. but I'm sure everyone will figure it out. It's always worked out before, right?"

Outrageous? I think we can all agree that simply changing the definition of a medical disorder does not actually take away the difficulties experienced by the person with that disorder. And, hopefully you've figured out that I'm not really talking about Diabetes, I'm talking about Autism.

Whether or not one agrees that the proposed criteria for Autism Spectrum Disorders in the upcoming DSM-5 is a substantial change from the current DSM-IV criteria is immaterial to this discussion. If you're interested in opinions about the content of the DSM-5 criteria, here are a couple of informative writings: Amy Caraballo (The Diagnostic Panic Room) and John Elder Robison (Panic Over Dsm-5 Changes in Autism Diagnosis).

What I want to point out is that it is outrageous that anyone is actually considering that it might be okay to boot people off the autism spectrum. Because that is what I've heard "professionals" spouting in some forums and news programs. That if we can narrow the definition of autism, we can save the money and resources for "the people who really need it." Which, in their way of thinking, would leave the people who have a working program in place out in the cold with no supports. And worse, without any understanding of what makes them different and what might help make things work for them.

That's the attitude I'm outraged about. That anyone would think it might be okay to simply change the definition of disorder to exclude people. That anyone might think that simply because some people have greater needs (in their opinion) it might be okay to deny services to others who (in their opinion) have lesser needs.

I'm not saying the new definition will exclude people. I'm just saying that the unabashed glee of some people who think it will is outrageous.

 

Dysgraphia: When it's more than Bad Handwriting

When my son was in school, there wasn’t much information available about Dysgraphia. Now, there’s plenty, however, it’s still quite a confusing issue. Particularly since many professionals don’t really seem to be “on board” with Dysgraphia as an actual disability.

The College Board is very cut-and-dried. To them, dysgraphia is a fine motor skill deficit, period. No matter if a child has never been able to produce more than a paragraph using a pen or pencil; if testing doesn’t show a fine motor deficit, then that child will be handwriting their essay, thank-you-very-much. However, the fact that they even have dysgraphia listed as a disability is a step in the right direction. Just two years ago, they did not.

Many professionals agree with The College Board’s definition. So, when your child has problems with handwriting, they will test fine motor skills. This is appropriate, yes. What’s not appropriate is, if and when the test shows no fine motor delay, that they simply say, “Not dysgraphia, no fine motor delay, work harder.” Some occupational therapists just tell families, “We can’t help you with this.” Particularly if the child’s fine motor skills measure in the “average” range.

Yet the problem is very real, and very frustrating, especially for people who have something to say, and cannot get it out using a pen or pencil. It would be nice, and seems logical, to just let them use a computer for word processing, however, while some schools are happy to do this, others are not. And, you are still stuck with the problem of the SATs and other standardized tests requiring handwriting.

And, you’re also stuck with everyone else’s opinion about what you should do and their opinions about how important good handwriting is to being able to function as an adult: get a job, write a check (really?), go to the doctor, the DMV, I don’t know, the grocery store? Never mind that there are people with physical impairments who manage to actually get all these things accomplished: somehow if it’s neurological disability, like dysgraphia, many people think one simply cannot get along in the world without gaining that particular skill.

The NationalCenter for Learning Disabilities explains how to know if your child may have dysgraphia. You’ll see that some of the symptoms - difficulty with proper spacing, poor understanding of upper and lowercase letters, saying words aloud while writing, difficulty thinking of words to write, unfinished or omitted words, difficulty with syntax structure and grammar, for example - really don’t have a lot to do with fine motor control. The National Institute of Neurological Disorders and Stroke agrees that it’s more than simply a fine motor difficulty.

So, since you and your child have to live in a world of not-so-accommodating others, as well as professionals who are not yet in agreement about what dysgraphia is or how to treat it, what to do? You have two options:

1) Therapy (that you might have to pay for yourself)

2) Advocate for accommodation, and teach your child to advocate for themselves

 

Therapy

Like any other neurological difficulty, dysgraphia is something that can be worked on: the earlier, the better. If you have a young child who has been diagnosed with an autism spectrum disorder, you can figure that they will most likely need extra help in this area, and start working on it while they’re young. The AmericanAcademy of Neurology reports that children with autism are more likely to have handwriting problems, so go ahead and be proactive.  

If your child is older, you already know if they are struggling in this area. As someone gets older, they may or may not benefit from therapy, so you’ll want to try therapy and also be mindful that you are not simply going through the motions and never getting anywhere. If you’ve worked on it for a couple of years with no real progress, perhaps it’s time to think about how to work around it. Many professionals who do understand about dysgraphia are now recommending accommodations over therapy.

The first step to obtaining therapy is testing. Wrightslaw does an excellent job of helping parents understand just what schools should be testing for when they test for dysgraphia: it’s not just fine motor skills. Keep in mind that if your child tests “average” then schools do not need to provide therapy, even if the child is struggling. This doesn’t necessarily mean your child wouldn’t benefit from therapy for dysgraphia, it just means that they aren’t quite “bad enough” to receive therapy for free.

If you need to find a therapy provider on your own, the International Dyslexia Association also provides help and information about dysgraphia. You can send them an email asking for information and a list of providers in your area.

There are things you can do with your child or even older child or adult to help with handwriting. Some parents report that using a Tomy Megasketcher helps their children practice letters without fatiguing. Kate Gladstone has developed a handwriting repair program designed for people, who, like herself, have neurological handwriting difficulties. This program is now available as an iPhone application.

 And, last but not least, something I've been wanting to try because I have a very awkward grip is The Writing Claw, a tool that helps maintain a tripod pencil grip. 

Advocate for Accommodations

Most colleges have no problem giving accommodations for dysgraphia: they will assign note-takers, allow a student to use a laptop in class, and allow a student to word-process written assignments and tests. They require recent documentation of disability, however, so be prepared to show it. And, your child has to be willing to ask for the accommodation, so part of your job is to teach your child how to ask for help when they need it. At the beginning of each semester, my son has to take an accommodation letter around to each professor. He balked at it at first; but through discussion realized that he truly needed the accommodation. He was really happy he had done so when he was able to get his math test grade changed because the teacher misread his answer.

Public schools vary in their willingness to accommodate, although I’ve found that they are much happier to let a student use a computer to word-process if they are not also being asked to provide therapy. Again, keep in mind that you’ll need really good documentation for the future, so be sure everything is clearly stated in your child’s IEP, and proper testing is done.

When asking for accommodations, arm yourself with information. This won’t help you with those SATs, however, it will help you everywhere else, so stay informed. The Learning Disabilities Association of America lists some good accommodations, and Susan Jones, M.Ed, wrote an excellent review of accommodations and modifications for dysgraphia for The Resource Room. And ABC News reports that “For Intelligent Children with Autism, Handwriting is Barrier.” 

If you go this route, be prepared to spend some of your time educating those who work with your child. Each new year brings new teachers who do not necessarily understand that your child is not being “lazy” or “messy” when his or her handwriting is almost illegible. You’ll need to be creative, too. Science lab notebooks, for example, presented a challenge for my son, until we got duplicate sheets, had him word-process his answers and then printed them out and pasted them on the pages. More work, yes. Taught him the value of neatness, absolutely. Neatness that he was actually able to accomplish.

If I had to explain my beliefs about disability, I think that might be it in a nutshell: work as hard as you can to overcome your difficulties, understand that others are always going to have their perceptions and you do have some responsibility to try to understand and accommodate them while seeking appropriate accommodations for yourself. 

 

Dysgraphia: When it's more than bad handwriting by Sara Gardner is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.
Based on a work at http://ncld.org/.

An Autistic Dream

I wrote this two years ago, and during that time I think the autistic community has made some definite strides. The nomination of Ari Ne'eman to the National Council on Disability is one of these strides. I can't say enough about how fortunate our community is to have Ari working so tirelessly on our behalf. If we succeed in accomplishing my dream, Ari will have played a critical role in that. Please go check out the Autistic Self Advocacy Network (ASAN) for yourself, and support their efforts if you can.

An Autistic Dream

Almost forty-five years ago, Dr. Martin Luther King, Jr. had a dream that one day African Americans would enjoy equality, and today, Barack Obama is running for President. I believe Dr. King would be proud. Because of his dream, and the incredible drawing-together of blacks and whites alike to gain civil liberties for minorities, the United States of America is a very different place today than it was in 1963.

I, too, have a dream. A dream about acceptance and equality. A dream that one day autistics will not have to hide our true selves in fear and shame. A dream that one day parents will proudly say "my child is autistic" and look forward to understanding and support, instead of denial and exclusion. A dream that a man will say to his colleague, "I am autistic" and begin a dialog of communication and kindness, instead of back-stabbing and rumor.

I have a dream that research efforts will be spent on learning ways to communicate with autistics, rather than "cure" them. I have a dream that families will stop seeing their autistic children as typical children with a disabling flaw and begin to see them as they are: fundamentally different – neurologically different – and thus these families will start to see all the positive differences as well as the more difficult-to-understand ones.

I have a dream that people will understand that the autism can no more be removed from an autistic than "neurotypicalness" can be removed from a neurotypical person. Our brains are wired differently. Change our brains and you change who we are. I have a dream that one day, autistics will be judged – not by the size of their amygdala - but by the content of their character.

But, unless autistics are willing to come out and say "I am autistic" this dream will never become reality. Unless parents are willing to tell their children "you are autistic" this dream will die. Unless people are willing to stand up, and insist that autistics have basic human rights to freedom of expression – expression that just might include rocking and flapping and twirling around – then autistics will forever remain in the shadows.

Families will continue to hide autism from their children and acquaintances. Adults will continue to hide their autism from their co-workers and friends. All without ever realizing that their condition isn't really "hidden". All without realizing that the "typical" people know intrinsically that there is something very different about them. And that they are being labeled whether they choose the label or not.

So, I say – choose the label of Autism. Choose truth. Choose reality. Autism is not a bad word. It's a neurological difference. Autistics have made, and continue to make, incredible contributions to our society. We need autistics. And autistics need to be accepted and respected. Dream along with me, that one day, "autistic" will be just another word, and not a pejorative. That one day on a playground, a child will tell his companion, "I'm autistic" and the other child will say "Cool! Come on, race you to the swings."

Asperger's or Quirky?

Often parents will express to me that they don’t wish to tell their child, or others, about an ASD diagnosis. “I don’t want to label them,” they say. I suggest that we label children all the time – smart, handsome, fun, witty, kind – but my logic doesn’t fly with them.

Most see autism as a negative label, and are worried about the consequences of saddling their child with this. Some don’t quite really believe their child has a “disability” and would prefer to think that Asperger’s, especially, is just a personality difference. And I’m cool with that, except, it’s a “personality difference” that can be made a lot easier to live with by implementing interventions and accommodations that are commonly used by people with this same difference. Some parents worry that their child will use the diagnosis as an “excuse” to get out of doing things or for behaving badly.

When thinking about labels, ask yourself these questions: What labels do people assign to your child right now? What does the teacher think when your son blurts out in class, or “refuses” to write an essay? What do the other parents think when your daughter won’t “let” you brush her hair? What do the other children think when your child loudly insists on having her own way or throws toys? What label is your child giving himself when he doesn’t measure up to others’ expectations over and over again?

Francis Bacon said “knowledge is power” and I’ve found this to be true in regards to Asperger’s. Most importantly to me, learning about my son’s Asperger’s helped me put into place interventions and accommodations that have made him the successful and happy young man he is today. And that makes me happy.

My son found out about his ASD in an interesting way. We had just received the diagnosis, and were still learning about it, so hadn’t yet told him. We weren’t even sure we would. I was reading the book “Freaks,Geeks and Asperger's Syndrome"  and was hiding the book, because the name sounded so awful.

My son (he was 11 at the time) found the book, and started reading it, probably because I was hiding it. When I discovered him, he said, “Do I have this?” I replied that we weren’t sure, and he said, “I do, I do have this; this is me.” He was excited.It was like the final puzzle piece had clicked and everything made sense. It was a relief.

I’ve spoken to more than a hundred spectrum adults since that time, and the overwhelming majority of them have felt the same emotion upon learning of their diagnosis: relief. There are other feelings to be worked through, however, learning about the diagnosis has brought about positive changes in almost all of their lives. One wonderful thing it’s enabled them to do is to find peers – others who think the same way and share similar stories.

As a person on the spectrum or the parent of someone on the spectrum, here are some things you can do with a diagnosis:

1.  Find a support group where you or your loved one can enjoy a community of others who are neurologically similar. I can’t stress the importance of this enough, for children and teens as well as adults. 

2.  Obtain a neuropsychological work-up to determine areas of strength and areas of weakness. This will help you know where you need to focus efforts and what strengths you can use to compensate for difficulties.

3.  Seek knowledge. Learn as much as you can; help your spectrum loved one learn as well. If your loved one had diabetes, you would help them learn about blood sugar testing, insulin levels, and proper diet and exercise. Autism is no different – one needs knowledge in order to manage differences. For a list of places to start online, try the links page on my website.

4.  Seek services. Whether this means Speech & Language services, Occupational Therapy Services, Social Skills training, Cognitive Behavioral Therapy, or something else, seek services to help build skills in areas where they are lacking. The neuropsychological testing will help you know where you need services. A medical professional can give advice also.

5.  Seek help with parenting. A fantastic place to start is Ross Greene’s book “The Explosive Child” . You can learn more about this parenting method here.

I hope for a world where one day the word “autism” will not carry a negative connotation. There are people working tirelessly for this: the Autistic Self Advocacy Network does amazing work and is run by an incredible young man, Ari Ne’eman. Please support this group’s efforts if you can; they are well on their way to making the world a better place for the autistic population. Another place to learn about autism self-advocacy is Wrong Planet.

With knowledge, and the power that it brings, those on the autism spectrum can grow to lead happy, productive lives. As my son’s psychiatrist once said, “Some day he’ll graduate from Asperger’s to Quirky.” Maybe so, however, he will most likely always look to the tools used by those in the autistic community to navigate his way through things that are difficult for him, so that he can strive to do his best, just like I do.