Congratulations to Tumblr user captain-irrayditation who is the winner of the weighted blanket giveaway. There were a ton of entries and I wish I was able to give every single person a weighted blanket. Hopefully there will be more giveaways in the not too distant future.
Looking for Input from Women Who are Late/Mis/Un-Diagnosed
I’m writing a pair of articles for the Autism Women’s Network about the high rates of late, missed and misdiagnosis in women on the spectrum. If you’ve experienced any of these and would be willing to be quoted in the article, please take a look at a short questionnaire I’ve put together to collect more information on the topic. There are five questions but feel free to answer even one if it applies to you and you’d like to participate.
One year ago Wednesday I made my first post on this blog. It was really scary until I realized that hardly anyone would see it . . .
Fortunately some people eventually found the blog and those people shared it with other people and things kind of snowballed from there. Rereading that post, I realize that my perception of what it means to be autistic has changed a lot in a year. (If you read that link, keep in mind that I had no idea what I was doing and I made some silly mistakes/assumptions that make me cringe now.) What hasn’t changed in the past year is my wish for this to be a place where people can share their experiences and knowledge and questions. You all have made that come true in ways I couldn’t have dreamed of a year ago.
Glitter stars for everyone!
Earlier this summer I wrote an article for a quarterly magazine published by Autism West Midlands so I was very excited to get a copy of the magazine in the mail this week. Julia, who is absolutely lovely to work with, also sent me rainbow-themed bookmarks and stickers.
In the comments on my infodumping post last week, a mom mentioned that her son’s special interest is stop signs. He’s 6 and he loves everything stop sign related. His teachers think this is a problem and try to discourage his interest. But his mom, who sounds like an awesome person, encourages him to do stop sign activities at home, both for fun and as a way to learn new things. That got me thinking that we could potentially make a little boy happy and show him that there are lots of adults who think that having a special interest isn’t weird or something to feel bad about.
So how about if we celebrate Tommy’s special interest by seeing how many photos of stop signs we can come up with for him? Since he’s already using Google to find photos online, I’d like for us to share photos that we’ve personally taken. The easiest option is to take a photo of a stop sign in your neighborhood or if you’re feeling ambitious you could find some interesting place in your area that has a stop sign. Or maybe you happen to have a vacation photo with a stop sign in it?
I know there are readers all over the world. Hopefully we can get some different designs and languages, but any stop sign you can add to the collection would be great. If you want to write a few sentences about the photo–location, pronunciation for non-English versions, a bit about you or your neighborhood, a fun fact about the location (or the sign in general if you don’t want to reveal your location)–that would be awesome. Just keep it appropriate to a 6-year-old.
You can put your photo in the comments below. You can share it on Twitter (mention me so I see it: @aspiemusings) or my Facebook wall (https://www.facebook.com/MusingsofanAspie). Or you can post it on Tumblr, Instagram or a photo sharing site and get a link to me. I’ll put together all of the photos and notes in a post for Tommy. Let’s put a deadline of the end of the month on this so we all feel motivated and such, executive function being what it is around here (especially mine!)
I’m going to start us off with this photo of a stop sign from a train platform in Korea:
Online Neurodiversity Lecture Series
In spite of its rather odd title, I’ve been enjoying the “No Mind Left Behind” lectures that @quarridors shared a link to ages ago. I’ve watched most of the first day of the scientific track, which I found more interesting than the bits of the “reality” track that I’ve seen. The scientific lectures have the benefit of being very short (no more than 20 minutes each) so the speakers are forced to get the point fast. Many of the lectures focus on autism, but ADHD, OCD, Tourette’s and other atypical neurologies are also covered. A scan of the lecture titles will help you narrow things down to your areas of interest pretty quickly.
Two lectures in particular that I enjoyed were the ESSENCE lecture on very early symptom identification and the lecture on the development of empathy. One thing that struck me in the ESSENCE lecture was the idea that very young children are often diagnosed based on the type of doctor that they see. ASD, ADHD and Tourette’s can look similar in two- and three-year-olds, so a child who gets seen by an ADHD specialist at that age is more likely to get an ADHD diagnosis while a child with similar symptoms who gets seen by an ASD specialist first is more likely to be diagnosed as autistic. The lecturer also said he believes that children younger than 3 with hyperactivity symptoms should first be evaluated for ASD before ADHD is considered.
The lecture on empathy by Chrisopher Gillberg was fascinating because he is the person who coined the term Empathy Quotient and his beliefs about empathy are so different from Simon Baron-Cohen’s (who developed the infamous EQ test). Gillberg takes a very neutral, scientific view, avoiding the sort of emotionally charged language we usually see associated with empathy and autism, which is refreshing.
This weekend I brought over a bunch of survey answers from Survey Monkey. Yes, people are still answering the adult autism surveys! There are links to all of the survey posts from the final survey if you want to check out the latest additions.
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?
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.
This might be a new regular or occasional feature. How’s that for a commitment? There are a lot of little things that come up during the week that I’d like to share but they’re too small to make a proper post about. Instead, I’m going to roll them all up into one hot mess of a post on Mondays.
News from the Melatonin Front
I accidentally bought 3 mg melatonin tablets rather than my usual 5 mg tablets. Cue three nights of bizarre dreams before I realized my mistake (followed by a frantic midweek trip to Target). Yikes. Now I see why some people can’t take melatonin. I didn’t have nightmares but I did have some freaky dreams and woke up feeling like the night had been about a week long.
Research on Using the Internet as a Communication Medium
Amy Woodham, a masters student in psychology in the UK is doing a study on how women with Aspergers and High Functioning (ack!) Autism use the internet for communication. It’s a short, mostly multiple choice survey that took me about 15 minutes to complete. To participate, you need to be a female over the age of 18 with an official diagnosis of AS or HFA (I know that rules a bunch of you out, sorry). If you’re interested, you can find details here.
**Updated to add that you’re welcome to participate in the study if you are self-diagnosed/suspected AS/HFA. See the comments for the source of this additional information.
A-dar is an Actual Thing
I live next to an elementary school now. It has a giant playground with a forest of colorful plastic playground equipment, as playgrounds do these days. Last Tuesday when I took the dog out for our midday constitutional, I saw just one girl on the playground. She was walking around the paved play area, making loud vocalizations while looking at the numbers and shapes painted on the ground (for playing hopscotch and such). There were four adults nearby, chatting and paying no mind to girl’s unusual behavior.
“Wow,” I thought, “best recess ever.”
As I rounded the corner of the playground and headed out into the nearby field, I noticed another girl, hunched over at the end of a slide, scraping up and sifting through the bark mulch. Then a boy, kneeling under another slide, doing something in the dirt I couldn’t make out. Oh, and a second boy, sitting in the middle of yet another slide, flapping his hands, which were hidden in his shirt sleeves.
This seriously looked like the best recess ever to me. As I walked by the fence, feeling happy for these kids who were getting to whatever they damn well pleased on the playground, the flappy boy slid down the slide and ran over to the chain link fence to watch me. I waved. He licked the fence.
This would be even more fun if you all had things to share too. What’s going on with your week? Find anything new or exciting or interesting you want to tell everyone about? Could be ASD-related or not. I have no idea how this might work, except that we should do what makes us happy.