Monday Morning Musings (6/3)

Yale Autism Seminar Video Series

I’ve been watching the Yale Autism Seminar video series (available free from iTunesU). It’s advertised as the only autism-specific college course and is basically a chance for you to sit in on the lecture portion of the course as it was given at Yale a couple of years ago. The videos cover a wide range of topics, with a strong focus on childhood autism. Each video is a 60-90 minute lecture on a single topic. A few of the lecturers include videos or other visual media to illustrate key points, but generally think “text-heavy Powerpoint presentation” for the lecture format.

Because each topic is covered by a different specialist, the quality of the lectures varies. I especially liked “Communication in Autism” by Dr. Rhea Paul. It was packed with information about how children develop language from birth through adolescence. I’ve also enjoyed Dr. Ami Klin’s presentations.

Be forewarned that there is triggery content in most episodes–not so much the factual information but the language that many of the lecturers use and sometimes their attitudes toward autistic people. I consider myself pretty resilient to triggery content but I can’t watch more than one (and sometimes only half) every few days. It’s eye-opening to see how professionals who work with autistic people view autistic people.

Not Very Neanderthal

Back in March I spit in a little tube and sent it off to 23andme to get my DNA genotyped. Last week, I finally received the results. The biggest surprise is that my body doesn’t make the lactase enzyme. I guess I’m lactose intolerant but didn’t know it? My 40s are turning out to be a banner decade for stuff like that. I also have an elevated risk for Type II diabetes. That’s good to know, because I can actually do something about it. Not so much on the elevated risk of Alzheimer’s or restless leg syndrome.

There are some fun facts among the results: I can blame my higher than average caffeine consumption on my genes and I have a significantly lower than average percentage of Neanderthal DNA (in the 8th percentile). I never put much stock in the aspie-Neanderthal theory, but I gotta admit I was curious.

I Made a Thing

I’ve been putting my Adult ASD Diagnosis series together into e-book format. This is what I have for a cover design at the moment. Yeah? No?

cover

I’ve added about 5,000 words to what’s been posted here on the website: primarily background material about ASD and the DSM-V criteria plus a big list of questions I developed to help people identify autistic traits in themselves. My main goal in making it into an e-book is reaching a wider audience. When I first went looking for information about ASD, I went to Amazon.com and did some web searches. Neither of those was very helpful. Unfortunately, I didn’t discover the blogs of autistic adults until later.

The material that’s posted on the blog will stay, so no worries about anything disappearing. I’m also hoping that I can use the proceeds from the book to do some giveaways here. I thought about donating to an autism-related charity but then I thought “hey, I know plenty of autistic people!” and wouldn’t it be better to do a giveaway of something like a weighted blanket to an autistic person who will directly benefit from it. I have no idea how this is going to work, but that’s my dream outcome.

ETA: I accidentally fell way behind on bringing over the survey replies from Survey Monkey for the final survey ! Executive Function fail.  I’m so sorry and am in the process of getting caught up. There are about 20 additional responses that I will post this morning.

46 thoughts on “Monday Morning Musings (6/3)”

  1. I love the cover! The only thing that I don’t love is the way that your name is on the upper right corner. Probably because it is the only text that isn’t centered? But I did notice that you could comfortably fit all the letters of your name on the colored pencils, without awkward spaces (ha!) if you have no letters on the first and last pencils, and one pencil “space” between the first and last name. But that probably wouldn’t work out from a graphic design point of view. 😉

    1. Thank you! I could center my name, but I’m not sure if then might get visually lumped in with the title stuff at the top? I experimented with putting my name at the bottom too, on a blue box near the bottom of the pencils (though not one letter on each pencil – I love that you counted!) and wasn’t happy with that either. Hmmm.

      Funny aside: I completely forgot to include my name at all until I was nearly finished. Oops.

      1. “Funny aside: I completely forgot to include my name at all until I was nearly finished. Oops.”

        That is funny! I could see myself doing the same thing, ha!

        Oh, another idea! Instead of : Cynthia Kim………a guide to
        it could be: Cynthia Kim’s Guide to

        Then, technically, it would be “lumped in with the title stuff,” but in a good way!

  2. Total awesomeness all around from the very valid reason for lots of caffeine to taking your experience and making a way to help others. Totally cool stuff here. The Yale lecture series, that’s very interesting too and without even watching I am not at all surprised by the attitude you said you sometimes saw. I have seen it all too frequently… I call it arrogance and I decided a long time ago I have no patience for arrogance because seldom ever did that arrogance translate into help for my son. Nope. I am Arrogant Intolerant! 🙂

    1. There is arrogance and also some ignorance, which is ironic coming from people who specialize in a subject. :-/

      I wonder if any of them considered that autistic people might actually watch their lectures and how it would make them feel. Probably not.

      1. “Arrogance and ignorance, just to top it off…” Oh there is a Jimmy Buffett song line for every occasion! 🙂 My experience showed me so many professionals didn’t dare admit (maybe even to themselves) their ignorance which I dislike because they don’t know everything and that’s okay because really, who can know everything? I admire the person who can admit they don’t know something but are willing to work with me to try to find an answer. Maybe I’m weird that way. And I can’t even use the E word, because no one is an, okay, I will use it so you know what I’m talking about, no one is an Expert on someone else. You just can’t be. When Teddy was young and we went to professionals for help the only Expert in the room was Teddy and talk about ironic, he was the person least heard. And you probably already know the answer to your question, it is unlikely the speakers consider the point of view of the autistic because sadly I don’t think they think there is any benefit, any gain, appealing to autistics. And by benefit and gain I mean quite frankly professionally and economically. Cynical? Yep, I am. 18 years in the autistic world, you bet your bippy I’m cynical of most professionals. The work Ted has done for himself eclipses the work of most professionals. I trust Ted way more than I trust anyone else. I am grateful he is to the point in his life where he can advocate for himself. I now am just his wingman. 🙂

        1. I’m glad you didn’t make me guess the E word. It might have taken me a while. 🙂

          I’m not a fan of calling professionals in a field experts either, unless they truly are, but that probably refers to less than 1% of people in a given field. The real experts on autism are indeed autistic people. There were times I found myself wanting to yell at my monitor because the lecturers are drawing conclusions about autistic people’s behavior that just feel so off to me.

          You may be less cynical than you think. One of the lecturers actually says that the reason so much research is being done on autism is because researchers know that’s where the money is (I guess in relation to other psychological or neurological topics, certainly not in comparison to, say, cancer).

          1. I’m so glad you told me this, I felt like a grouchy old cynic after my last comment. I feel much better now! 🙂

  3. I suspect it might be the triggery content that’s actually factoring into my decision to not get a diagnosis. My experiences with a psychologist/psychiatrist and a guidance counselor I worked with/asked for help from really soured my experience. I was prescribed medication or told that the bullying didn’t exist; basically, quick fixes or responses that didn’t acknowledge the real underlying problems. I realize that on their end, they probably didn’t have the tools at the time to understand my issue, or that prescribing medication might be part of some protocol. Maybe they just don’t want to take any chances. However, since then I’ve been a lot more careful about who I get help from and making sure that they’re really interested in helping me work through my problems without judgment or quick fixes!

    1. I encountered some of those same types of attitudes along the way to a diagnosis. It’s hard to recover from and want to keep seeking a diagnosis when you’ve been dismissed like that, even if that wasn’t necessarily the intent of the providers. 😦

      1. I agree, it’s definitely very difficult, and I’m not sure I’m mentally ready to deal with it (without any frustration on my end, at least), so I admire your courage in getting a diagnosis in the first place!

        1. Awww, thanks. I guess I feel more lucky than brave. I had good support and was fortunate enough to eventually find a doctor who had dealt with a large number of autistic adults. I also know that five or ten years ago I wouldn’t have been in a place to deal with it, so don’t rush yourself.

  4. speaking of diagnosis, my daughter has just discovered she may in fact have ASD and wants to get a diagnosis. It has been a real eye opener to me to discover that the girl who marched to the beat of her own drum is truly wired different. I knew she was unique and wonderfully different but could never figure out why. Now it is becoming so much more clear to me. However, who do you go to that is affirming and able to diagnose ASD in the Washington DC, Maryland area? Do you have any recommendations? We are kind of stuck and don’t know where to go from here. My daughter is 30, single and still seeking direction in her life. As her mom, I am committed to be her wingman and give encouragement and direction if possible. Her sister is a pediatric nurse practitioner with two small boys and my daughter wants to get a diagnosis before she shares her findings with her sister. She doesn’t want her sister to stress unless she has good information to share. Any help out there?

    1. A good resource for adults in the Maryland/DC area is http://www.csaac.org/ – they are a nonprofit that provides resources for adults and may have suggestions for finding someone who does adult diagnosis. I’ve also heard that Loyola University does some adult diagnoses on an ability to pay basis through this clinic: http://www.loyola.edu/clinical-centers/services/psychology.aspx

      Perhaps others will have additional suggestions. It can be hard to find someone who does adult diagnosis, but don’t give up. It’s great that you’re so supportive of your daughter’s desire to get diagnosed and to also provide that information for your grandsons. Best of luck with it.

  5. I’m going to have to join you in viewing these lectures. Thanks for sharing. Curious to see what I will learn. Also, incredibly intrigued now on DNA testing!!! Thanks for the intro to 23andme! :0)

    1. I hope you find the lectures educational. I’ve learned quite a bit from them and it’s been helping me organize my knowledge about ASD in a more formal way. I would just advise taking it slow because the lectures can be a lot to process.

      The DNA thing is really cool!

  6. Thanks for the tip about the iTunes U lectures, I’ve downloaded the ones you mentioned to my iPad. In return I recommend this entire 2011 ‘No Mind Left Behind’ conference available for free online http://www.klewel.com/conferences/mindroom2011/ The talks on both days about ESSENCE and gender (including the transgender overlap) were especially interesting to me, as were the neurology and neuroanatomy talks.

    The lactose intolerance discovery is a little close to home for me as I’m still struggling to track down just what food it is that gives me terrible IBS. I’ve been on a severe exclusion diets that does work but sometimes when I slip I have no ill effects and sometimes they’re immediate and dramatic. Lactose is currently one of my suspects, having ruled out gluten/wheat.

    I’m really glad your diagnosis guide is going to get a wider audience. I’m not sure about that cover though, the coloured pencils image really makes me think children and school when it feels like a guide aimed at autistic adults really wants to set itself apart from the huge number of books about children. I also think ‘I Think I Might Be Autistic’ should be the prominent title at the top, and the rest a smaller descriptive subtitle, then with your name centred under that (or perhaps between the two). I also found the text above the pencils too small and really difficult to read. Hope that helps!

    1. Thank you for the link to that conference. Just at a glance, I see a bunch of videos that I want to watch.

      I’m up in the air about the lactose intolerance. The 23andme explanatory information does say that gut bacteria can contribute to being able to digest lactose even with the lactase enzyme. I could make a case for having mild symptoms but I could also make a case for not being affected (though part of that may be me just not noticing what’s happening with my body, which is sometimes a problem). I’m experimenting with cutting out dairy except for lactose-free milk for a few weeks to see if I feel any different.

      And finally about the book cover. Thank you for the detailed feedback! I’ve been fooling with it this morning and have moved all of the text around and resized things. This is a great example of perseveration because at some point in the process I wanted to link the “I Think I Might Be Autistic” to the pencils using a font and pencil stroke to make it look like one of the pencils had written it. That was a failure and then I never thought about moving the text back up to the top where I’d started out with it (and which is the technically proper place for it, since it’s the main title).

  7. I can see what Quarries and Corridors is saying about the cover, but I’ll take the counter point on it. I like the colored pencils as a neat image for a “spectrum,” and adults use colored pencils, as artists, too. In that way, I like how “I Think I Might Be Autistic” appears with “Autistic” right over the pencils to emphasize the pencil-spectrum image. However, I do agree that the lettering of “I Think…” should be the most prominent on the page. What happens if you decrease the font size of the “A Guide…” part? Though it looks like those oppositely colored sections are the same size, I think the top part can be smaller, maintaining the opposite color visual, but making the “I Think…” part even more prominent. With those changes, the font of the subtext above the pencils can be enlarged a bit, though I hope it would be more readable in life size, as I too can barely read it in this image.

    I’ll also agree with Liz and say it probably works a bit better with your name centered at the top.

    I would be very excited to see you put this book out there. You certainly have the material and the voice to provide a great resource to the adult autistic community. Though I have, and like, recommending your blog to others, it might be easier to start of with the nicely packaged book as a first resource, to be followed with the blog as a continual source of new info and conversation with like-minded community.

    Regarding the academics, yes, most of them are arrogant and ignorant. But, in their defense, the academic environment and founding sources encourage “arrogance,” since they need to look like experts to get paid. Most of them know they are ignorant about many things, but must be strategic about when and where they advertise that ignorance, namely in garnering more financial support for continued research. Still, I agree that most of them probably need a lot more thought and work to have more respectful communication, while they assert what they know, and humility in admitting what they still don’t know. What we really need is more autistic people becoming experts and doing those lectures.

    All the more reason for your book. I hope you keep at it, and gain comfort with having your name on it, as you are a true expert.

    1. Oh I agree that it’s a neat way of symbolising the spectrum and that coloured pencils are used by adults (I in fact used a set of multi-coloured pens to draw the mind maps I used to self-analyse in preparation for my assessment).

      What I mean was that there’s a visual language used in book covers. Here are a set of autism-related books prominently featuring pencils, all school related:

      http://www.amazon.co.uk/Practical-Teachers-Secondary-Education-ebook/dp/B00C93B9QA/
      http://www.amazon.co.uk/Autism-Flexischooling-Classroom-Homeschooling-ebook/dp/B00CQ8OEZ6/
      http://www.amazon.co.uk/Aspergers-Rules-Sense-School-Friends/dp/1433811278/

      Here’s a book that comes in a children’s edition and an adults’ edition, the primary differentiating factor on the covers being pencils for children, pens for adults:

      http://www.amazon.co.uk/Asperger-Syndrome-Owners-Manual-Interactive/dp/1931282919/
      http://www.amazon.co.uk/Asperger-Syndrome-Owners-Manual-Two/dp/1934575062/

      By this logic perhaps the only change needed is to switch from coloured pencils to coloured pens 🙂

      http://depositphotos.com/1416635/stock-photo-Coloured-pens..html
      http://depositphotos.com/4337928/stock-photo-Set-of-multi-colored-ball-pens.html
      http://www.istockphoto.com/stock-photo-942267-pens.php

      1. I’m stubbornly attached to the pencils. I get what you mean about the symbolism re: autism and school/children, but, well, see the part about me being stubbornly attached to the image. 🙂

    2. I’ve moved all of the text around, changed the sizes and centered everything. It’s looking better now. Thanks for the input – it’s so hard to see our own work objectively, even if something should be fairly obvious. My main reason for putting the material into book format is to make it more accessible to a wider audience and as you said to put in one neat portable package so don’t hesitate to refer people to the blog series (or the blog in general – thank you for that) if you prefer. I’m all about people getting their information in whichever format works best for them. 🙂

      “What we really need is more autistic people becoming experts and doing those lectures.”

      Yes. Ideally, it would be great of have autistic adults being the ones to not only educate others but to conduct assessments, do research and work with other autistic individuals.

  8. Great idea to make the series into a book!

    Re. the book cover: maybe a bit cluttered and out of alignment. The later maybe just because of the way your name is placed to the right, like someone else pointed out. Re. cluttered, maybe reducing the letter sizes so there is more space to rest the eyes on would help, so it is not all filled out.

    However, that may be down to cultural preferences – I am Scandinavian, and we tend to prefer simple lines and open spaces:-) The appeal may be different for American audiences. I have noticed that many American websites like e.g. Amazon and some book covers of American book covers tend to be more busy than typical Scandinavian styles.

    What do the coloured pencils symbolise? A spectrum (of colours)? (I assume they symbolise something… Since the book is not about drawing)

    1. I have done my best to clean up the lines a bit. That’s a good point. I do generally prefer more minimalist designs but I suppose if it’s too minimalist it might get lost amid all the other bright shiny noise. *sigh*

      The pencils are meant to be symbolic of a spectrum, yes, without being too much of an overt rainbow image (which I’m not wild about in general). I was also thinking that people will need to do some work to make it through the self-discovery and/or diagnosis process so the idea of writing/sharpening up your pencils/etc.

      Mostly I wanted something happy and bright and positive because when I searched for adult autism diagnosis on Amazon so many of the book covers were depressing. Apparently some authors/publishers think we’re a lonely, sad bunch of people, when we’re depicted as people at all. Some of the covers had just hands or weird dark blotchy abstract images. Yuck.

      1. I see. Sounds good. If you want to continue the discussion, you can insert the revised book cover in a comment (like Quarries & Corridors does above) and people will probably continue to give feedback on the revisions. (although they/we may not agree with each other… that’s the disadvantage of having crowd-editors!)

          1. Yes, it looks much better.

            I think the tips of the coloured pencils are a bit too close to your name though, it is still a bit crammed. I would still make a bit more space between the components, but this layout is definitely much better organised, clearer in message, and well aligned.

            1. Great!

              Now I don’t want to distract you from the task at hand, and besides you have probably already thought of it anyway, just some expansive thoughts (you don’t need to read this comment now, and I don’t expect an answer. So if it is distracting then please just ignore it).

              I was just envisioning the current book project being the first in a series of short-books about adult autism, the next obvious candidates for print being your series Aspergers & Motherhood, and then Aspergers & Marriage.

              Also, some of your informal qualitative surveys are goldmines of information – e.g. the one about sensory sensitivities and school/work strategies. It contains so many different perspectives on these essential topics and all ordered & numbered (according to the question numbers). Of course people can collect the same types & volume of answers if they trawl the discussion forums of Wrong Planet and similar forums long enough and ask their own questions, but that goes for almost all information – it isn’t that the information is unique that makes it valuable, it is how it is organised and conveyed and made accessible to different groups of people.

              With the surveys, it is of course a big challenge to synthesise & communicate so many qualitative insights, because while it is a big volume of answers, unlike with quantitative data it can’t just be number crunched and visualised in charts & numbers, but it could maybe be summarised in a sort of catalogue-like visual layout, that enabled people to get a quick overview over all these different ways sensory sensitivity affect peoples’ lives with an array of different people’s life strategies to choose from.

              1. I have in idea in mind for another book, which would be longer and encompass parts of the blog like the marriage and motherhood series. I don’t think I have enough to say about either of those topics individually (at least right now) to make anything approaching book length but I do have idea for a bunch of things could fit together, I think.

                The surveys are trickier because I would need permission to use everyone’s answers and so many of them are anonymous. Perhaps one day I’ll organize them on the blog by question/topic to make them more easily accessible to readers. It really is a goldmine of information about what it’s like to be autistic and the amazing variety of experiences we have.

                And you know I can’t not answer a comment like this, even as I’m about to leave for the beach (which is apparently on the verge of having a tropical storm!).

  9. Just wanted to ask some little details…
    1. What is Yales Autism Seminar?
    Yes, I never ever heard of it. And because you mentionned it could be triggering, I’m not sure if I should watch it or not (because just a simple comment on an Youtube page can make drop to tears sometime, I’m not sure I want to get the urge of smashing some sense into people heads). Should I?

    2.By chance, do you know if the 23andme program is available in Canada, without heavy postals fees? Being jobless and full-time student make my tiny little budget… more tiny. But I’m really interested in having this test done, even more now that I got some biology classes! (in fact commenting is the way I’m relaxing after getting out of the final exam. Hourray for the blogging!)

    And now the comment:

    I just love the idea of finally having a book/information source written by an autistic mean for us and our family/friends. We really need more of us going into psychology or neurology, even if it’s only to smash some sense into «specialist» with a diploma to second a first-hands experience of autism. This would help to have less stupid theories… (like the one with the mother-child relation).
    As a matter of fact, I’v learned much more from your blog and Yes, that too than from my officials autism-related sources, psychology teachers or even the Canadian Autism primary organism. Particulary the survey part, all those details which you will NEVER find in a thesis but that aren’t less real. Instead of theorizing in the air, some of those specialist would gain a lot from reading your survey’s answers (even without the correct scientific method, it’s still a great start for a thesis on autism: listen to autistics. Read autistics)
    Actually, I’v recommended your blog to a a friend of my mother who think her own daughter may be Asperger before anything else. This blogs and a book written by Antoine Ouelette(Musique Autiste: vivre et composer avec le syndrome d’Asperger) were the only up-lifting information about autism that I found and that were written BY autistics. For that, Thanks.

    1. The Yale autism seminar is a class given at Yale University for mostly psychology majors who are interested in working with autistic people. It consists of the lectures which are posted online in the iTunesU portion of iTunes and a practical internship that the students take during the semester. If you’re easily triggered, I would say don’t watch it. I come away from most episodes feeling varying degrees of bad but I’m watching them because there is some good information and it’s basically an a-to-z college level course on autism. All of what I know about autism has been learned piecemeal and I discovered in going to college later in life that taking courses can be a good way to organize, round out and reinforce subjects where I have a self-taught knowledge base.

      I don’t know much about 23andme beyond my experience with getting my own sample analyzed. I imagine an email to them would be the best way to find out?

      Congratulations on finishing your biology course! The end of the semester is always such a huge relief.

      Thank you for the kind words. You summed up what I most want to do here, which is provide a source of information and positive community for autistic and possibly autistic individuals. Do you know if the book you mentioned is available in English?

      1. Sadly I think it’s not available in English. It’s a biography worth the read through… But the author itself got a blogspot (in French too, but music knows no language barrier and google translation may be enough). Maybe this would be a good occasion to practice the rusty French?
        Anyway it was the first ressource I found on my quest to understanding (and to get a good mark for the research) and it was the best one. The author is a compositor who teach at the Uqam (an university) and who got his diagnosis around the age of 47, with giftedness as a double diagnosis (beware the prejudices: it only means the brain works in a totally different way as others, not that they are genius. Simply the diagnosis means gifted people thinks DIFFERENTLY as others ^^).

        Here the blogspot just in case: http://antoine-ouellette.blogspot.ca/

        1. Thank you! I’ll take a look a the blog, for sure. My rusty French may be enough for me to get the gist of things. Google translate tends to be a last resort, given how ugly it makes everything. 🙂

          1. Google translate is actually pretty accurate when it’s down to one word or expression. But when it’s a sentence, yes it’s almost torture to use it!

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