At the end of July I embarked on a 30-day experiment, the aptly-named “What Do I Want” experiment. My intention was to report back at the end of August with a neat little of summary of what I’d learned.
Initially, I thought “what do I want?” meant learning to identify my needs and desires. That sounded intimidating. I had little idea where to begin so I began obsessing over decisionmaking. It was concrete and easy to construct rules around. It was also just scratching the surface of what I needed to be doing.
Wading deeper into the experiment, it became more difficult to separate what I want from other big questions of identity. What I am. How I act. How I think. Who I want to be.
I gradually began to realize that being autistic and alexithymic is only part of what makes “what do I want?” so hard to answer. There is a secondary element at work, an old defense mechanism. Wanting something, getting my hopes up, expressing a preference, letting desire creep in–that makes me vulnerable. To deprivation, to loss, to mockery, to pain. Not wanting feels safe. Ultimately, though, all it gets me is preemptive deprivation. There’s a lot of emptiness in not wanting. Continue reading What I Want
A few months ago, I watched a lecture by Sam Goldstein about resilience. At the start of his talk he mentioned how in Utah, teachers used to begin IEPs with a discussion of a child’s strengths. They’ve moved away from this in recent years because, as he put it, many teachers felt that listing what a child can already do well is a cursory exercise–in other words, a form of busy work that was taking up time they could be using to list all the things the child can’t do.
Now imagine that child moving through school, trailing this long list of things he can’t do behind him. That’s twelve-plus years of people emphasizing what he’s bad at and what he needs to fix. If he’s lucky, he has at least one cheerleader in his corner, telling him what he’s good at. Because when he sits down to fill out his college applications or goes for his first job interview, no one is going to ask him what his worst subject is or what he can’t do.
Transitioning into adult life requires knowing your assets. Universities and employers are looking for people who know how to put their strengths to work for them. Assets, Goldstein says, insulate us from risk and make us resilient to adversity.
The tension between building on assets versus fixing deficits is at the core of what we face as autistic people living in a neurotypical world. Much of what is framed as interventions and skill building and self-improvement is about being more normal, about “passing” better. But that feels like a Sisyphean task. Continue reading Focusing on Assets, Building on Strengths
When my daughter Jess was a toddler, we had a set of board books about the Disney Babies, which were the “baby” versions of Mickey, Minnie and Donald. Jess loved these books. For months, every night we had to read her the Disney Baby books at bedtime. The opening line of one of the books was
“It’s a bright sunny day. The Disney Babies go out to play.”
How do I remember that? Because to this day, I’ll still occasionally walk outside and say, “It’s a bright sunny day” and if The Scientist is around he’ll reply with some variation of “Mickey and Minnie go out to play.”
Yes, he remembers it wrong but that’s not my point. My point is that this is what delayed echolalia looks like in someone who has functional language skills. More than twenty years later, I associate that story with good feelings. Reading it made Jess happy and as she learned to talk, she would “read” the book to me, reciting the lines that she’d memorized.
It’s a bright sunny day has very specific emotional associations for me; It’s shorthand for feeling good about the day ahead.
What is Echolalia?
Echolalia is a fancy word for the repetition of spoken words. For typical toddlers, it’s a transition period in language development. For autistic people who don’t have functional language skills, it’s a means of communication. For me, it feels like a kind of ‘found speech’, similar to the cast-off pieces of pipe and rusted metal that an artist might use to make a sculpture. Continue reading Echolalia: That’s What She Said
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.
Nat is Blogging!
Nat, who is a frequent and prolific commenter here (as Quarries and Corridors), has a new blog. The latest post Understanding the ‘Spectrum’ in Autistic Spectrum is a great take on the different ways that the spectrum concept can be interpreted. I especially enjoyed the color wheel/slider bar analogy. I guess you’ll have to go read it to see what I’m talking about. 🙂 Continue reading Monday Morning Musings (9/16)
When I first realized that I was starting to experience the symptoms of menopause, I went in search of more information. The first thing I learned is that I’m not experiencing symptoms of menopause but of perimenopause, the period (heh) before menopause when a woman’s body starts producing less estrogen.
Menopause is the hormonal finish line; perimenopause is the roller coaster ride that gets you there.
There’s plenty of information out there for women experiencing all stages of “the change” but, of course, nearly nothing specifically for autistic women. I don’t know if autistic women experience menopause differently. It sounds like a difficult time for most women, with a lot of variation in symptom type and severity, so it’s hard to say if what I’m experiencing is different from the norm.
What caught my attention, though, is the overlap between some common traits of ASD and symptoms of perimenopause. Many autistic women–myself included–already struggle with sleep problems, temperature regulation, forgetfulness, mood swings (irritability, depression, anxiety), and fatigue.
My biggest question is will this make menopause less difficult because I have coping strategies in place that I can ramp up or will it make it more difficult by compounding my existing difficulties? A couple of years into this grand hormonal adventure, I feel like it might be a combination of the two. Continue reading Autism and Menopause: More Questions Than Answers
I like my comfort zone. A lot.
I don’t want to break out of it or stretch it or push myself out of it. Mostly I’d like to build a blanket fort in my comfort zone and never leave. But I know that isn’t reasonable. As an adult with responsibilities, there are times when I have to step outside my comfort zone.
My approach to these times used to involve a lot of metaphorical pushing and breaking and stretching. I would power through, often with an angry determination to just get it over with. This made hard things harder, but I didn’t realize that I had a choice.
Recently–and entirely accidentally–The Scientist showed me that there’s a better way to go about getting out my comfort zone. After doing some post-game analysis of why what we did worked, here’s what I’ve come up as a framework for helping someone step out of their comfort zone in a gentle, supportive way: Continue reading Stepping Outside My Comfort Zone
It’s been a hard few days in the autistic community. So much pain. Again.
I’ve been thinking a lot about what to write and honestly I don’t have the words. I cannot even begin to make sense of what I’d like to say. Instead of adding my voice to the conversation about Issy, I’m going to share some of the pieces that have impacted me over the past few days. In case it’s not obvious, these are all very difficult reads that talk about abuse of disabled children.
Again, We Mourn by Amy Sequenzia
Bodies and Behaviors by Michael Scott Monje
Where was I when Kelli needed help? by Beth Ryan
Dehumanizing by Ariane Zurcher
It Is Wrong to Murder Your Autistic Child by Judy Endow
Adult Responses to Autistic Children Lead to Escalation or Calm by Brenda Rothman
I’m turning off comments on this post and encouraging those who read any of the above to respond to the authors directly.
Links to resources:
Emergency Information for Autistic People and Parents/Caregivers/Others by Paula Durbin Westby
Emergency Information for those in the UK by Liam (thank you to Nat for the link)
Fact Sheets for Autistic Victims of Crimes and for those who work with Autistic Crime Victims (scroll down a couple of screens for the PDFs)
When I published “I Think I Might Be Autistic” as an e-book earlier this summer, I thought about giving part of the proceeds to a charity that supports autistic people. Then I thought some more and realized that, “Hang on, I know lots of autistic people!” Why not use the proceeds to give back to the community directly?
Sooooo . . . thanks to everyone who bought the e-book (or the print version!), I’m excited to announce the first giveaway for a 38″ x 50″ weighted blanket from Mosaic Weighted Blankets. The blanket pictured about is mine, which I absolutely love and use every day. The winner will be able to choose from the fabrics and colors that Mosaic currently has available.
To enter, do at least one of the following:
- Giveaway ends September 14th at 11:59 p.m. EST
- US residents only (due to the shipping cost)
- Max. 3 entries per person (1 for a comment here, 1 for a reblog on Tumblr, 1 for a comment/like on the Facebook status)
- 1 winner will be chosen at random on September 15th
Control. It sounds like a good thing.
Self-control. I’ve got this under control. Control yourself.
For years, I had everything under control. I swore I did. Everything from family activities to how people were allowed to feel around me. Is some small detail unplanned? I’ll plan it. Someone has a problem? I’ll fix it, whether they want me to or not. Something needs to be done? I’ll take care of it. In fact, I’ll do it myself because that’s the only way it will get done right. Because only I know what the right way is.
See, everything under control.
This should feel good. My entire universe working according to my grand plan. Only it doesn’t feel good. It’s exhausting and it drives the people around me up a wall.
It’s also an illusion. Continue reading Under Control