After trying to get a diagnosis for about eleven years, I FINALLY HAVE ONE! Or, several, actually. I’ve been diagnosed with autism spectrum disorder, ADHD, PTSD, and “very severe” depression.
The doctor kept saying she was “on the fence” about whether to diagnose me with ASD or with non-verbal learning disability (NVLD). I pointed out that they overlap a lot, and H and I both emphasized my sensory integration issues and stimming, neither of which is technically part of NVLD. The doctor finally accepted my argument that an ASD diagnosis would be more useful for accessing services outside of school, such as AANE services, ADA accomodations, and SSI. But for much of the session, she kept pushing the NVLD thing, and made some pretty strange arguments in favor of it. First she claimed she didn’t think I could be autistic because I have friends. I pointed out that most of my friends are also neurodivergent. Then she tried to claim that my social skills problems were caused by being trans; I pointed out that I didn’t experience any gender dysphoria until puberty, and that other trans people do not, as a rule, have problems with social skills. Then she tried to argue that my stimming – pretty classic rocking, twirling and hand-flapping, from toddlerhood on – was caused by depression, which doesn’t even make sense, because most depressed people don’t stim. Her last-ditch effort, even as she was agreeing to an official diagnosis of ASD, was a vague claim that her “gut” told her I wasn’t autistic, there was just “something about” me…
So yeah, even though I got the diagnosis, it didn’t feel like the huge relief that I thought it was. Instead of feeling like an expert confirmed what I’d suspected all along, I felt like I just got someone to reluctantly write down my self-diagnosis and sign off on it. In practical terms, there’s no real difference; an official diagnosis is an official diagnosis, no matter how it was arrived at. But in my mind, it hasn’t made me feel more confident than I did before.
As for the other diagnoses, I have every “inattentive” ADHD symptom, and I was already diagnosed with depression and PTSD, so no surprises there. I was also pleased that my report states in multiple places that it would be very difficult for me to work, which should be helpful for my SSI case.
To update you on my previous post, we don’t have H’s results yet. We get them Wednesday. His testing was over the course of two sessions: one for the actual neuropsych “tests”, and one for self-report “questionnaires”. So his testing has spanned nearly a month, mostly because we like to space out our trips to Boston, but for someone with a different schedule it could happen much more quickly.
Tomorrow is my (first?) testing day. I’ve been calm about it until now, but tonight I’m having a lot of emotions about it. I’m 28 now. I’ve been seeking a diagnosis since I was 16 or 17, and I’ve suspected I was “sort of autistic” since I was a kid. I was looking through some childhood photos today and thinking how in so many of the pictures I’m on a swing, a rocking chair, or a rocking horse. I decided to bring the photo album in as a sort of talking point for the interview.
I could write a lot more, but I better get some sleep since my test is at 9am. I will report back later with how it went.
My roommate, H, just went for neuropsych testing today. (Well, technically yesterday – I’m writing this in the wee morning hours). He finished all the actual tests today, but he goes back in two weeks to fill out questionnaires, and in another two weeks to get results. (The spacing of the appointments isn’t necessarily typical; we scheduled it around what days we go into the city.) H, D, and I are all pursuing a diagnosis, and I have my appointment for neuropsych testing in a few weeks. H is the first of the three of us to get tested, although D’s younger brother was tested and diagnosed PDD-NOS over the summer.
I can’t speak too much about the tests, partly because I wasn’t the one taking them, and partly because I’m trying not to find out too much about them so I don’t “spoil” myself for my evaluation. By that I mean, it sounds like a lot of the tests involved trying to figure stuff out, and if I learn too much about the tests and how H did them, it might mess up my test results if I have the same tests. This is kind of stressful, and now I’m anxious to get my test out of the way so I can stop worrying about avoiding “spoilers.” It feels like how Breaking Bad ended and I still haven’t seen past like season 4, so now every time someone mentions the show I have to cover my ears and go “LA LA LA I CAN’T HEAR YOU”.
What I can say is that the psychiatrist, and H, were happy to have D and me come back and contribute to the interview portion. D was kind of overwhelmed and didn’t say much, but I prompted H about a few things he forgot to mention, like how he’s really sensitive to different fabric textures, and how his dad likes to infodump about cars to anyone who so much as says the word “car”. So yeah, if you have a good friend who’s familiar with your autistic traits, it might be a good idea to bring them along, especially if you think you might blank out during the interview.
Another (probably?) unrelated thing that’s been on my mind is how, even though I suck at interpreting human body language, I’m really oddly good at interpreting feline body language. If my cat, Jake, lies in a particular position, I know he wants someone to pet him. If he goes over to D who is on the couch and makes a certain face, I know he wants D to pat the couch and invite him up. If D starts petting him and he looks annoyed, I know he wants D to move his arm out of the way so he can climb on his lap and crush all of his internal organs. (Jake, at last weigh-in, was 22 pounds.) So I’m constantly talking for the cats, like “Jake wants you to pet him” or “Dot wants to sniff your hand.” This is one of those things that I know is probably weird, even though it comes pretty naturally to me. And really, I’m not sure about the cause of this – it’s very possibly an autistic thing, but it could also be because I grew up as an only child who always had multiple cats. Or maybe a mix of both. I suspect it might be common in autistic people though. I know a lot of us tend to avoid people at parties and go hang out with the cat, and I bet for a lot of us, it’s because we find it easier to understand the cat.
I had trouble with sleep for as long as I can remember. As a kid, once I was asleep I would sleep through the night, but actually falling asleep often took hours.
The place I had the easiest time falling asleep was my grandma’s bed, for several reasons. It was softer than my mom’s bed (I didn’t sleep alone until I was 9 or 10, and I’m a big fan of co-sleeping in general for young kids). My grandmother would also put the closet light on for me and leave the closet door open a crack, to serve as a nightlight. This made the whole room feel more peaceful and less threatening. She would also often tell me ghost stories at my request.
But I think the most helpful thing was that my grandmother always listened to music to fall asleep. She would put on the local easy listening station – the kind that plays instrumental versions of popular songs from the 40s and 50s – and that never failed to help me drift off. I think the reason I needed music to sleep was that it gave my mind something to focus on, so I wouldn’t lie awake thinking all night.
I still find music helpful for falling asleep as an adult. Several years ago, I started using Pandora to help me fall asleep. If you haven’t used Pandora, the way it works is you create a station based on a particular artist or song, and then customize the station further by giving each song a “thumbs up” or “thumbs down”. I created my first sleep station based on Enya, and have since created similar stations based on Loreena McKennitt, Adiemus (aka Karl Jenkins), George Winston, Sigur Ros, and Helen Jane Long. All these artists tend toward soft, gentle “new age” music. I also find these stations useful as background music for writing or creating art.
The downsides of Pandora are that the free version has ads and “time-outs” – it turns off after you’re idle for a couple of hours. This may be an advantage for people who prefer a “snooze” function, but I find the time-outs tend to wake me up during the night. You can get rid of the ads and have less frequent time-outs by paying $36 a year for the subscription service, which also includes a desktop app. I haven’t yet felt the need to use the pay service, but if you find it’s the best way to help you or your child get to sleep, it might be worth it. Pandora also has mobile apps for iOS and Android.
Another option is simply to buy CDs or purchase albums off iTunes, Amazon, etc. I’d recommend any of the above artists, although Adiemus and Sigur Ros are a bit more “out there”, so you might want to listen to several of their songs first. If you like soft instrumental piano music, I’d go with George Winston or Helen Jane Long. Loreena McKennitt and Enya do more Celtic-inspired music, often with lyrics. You might also want to try some “world” music, like ‘ud, Native American or shakuhachi flute music, or Gregorian chant. (There are even Gregorian chant versions of Green Day – I’m not kidding.) You can also find “lullaby” CDs designed to help babies fall asleep – they’re good for older kids and grownups too! Some people might find music with lyrics keeps them awake, but others may find it helps them to focus on the music instead of their mental chatter. Try lots of different stuff and see what works for you.
A good way to try different things is to simply get a compilation album of different artists. A few of my favorites:
Finally, if you find music doesn’t work for you but you still need help drifting off to sleep, you might want to try guided meditations or white noise, which I will cover in separate posts.
This blog, and its title, are inspired by the excellent post Autistifying My Habitat, by Kassiane Sibley. In it, she describes methods she learned at Autreat – a retreat designed for autistics, by autistics – for helping to deal with life as an autistic person. Sibley writes:
At Autreat I learned that my anxiety and my difficulties with doing things that need done … are not things that I have to just live with…. Using what I know about what I need help doing and how my brain works, I set up a set of visual supports.
After reading this post, I realized this is something I’ve been doing for years. Ever since I realized I was autistic, I’ve developed and sought out visual supports, technological supports, routines, and sensory integration strategies to help keep up with life. I initially spent a lot of time googling “autistify” and similar phrases, hoping to stumble across more resources similar to Sibley’s post, but nothing else relevant ever came up. Finally, it dawned on me that I know lots of tips and tricks for how to be successful as an autistic person, and that I could share those with others. Thus, this blog was born.
A note on that word, success: I define “success” as “accomplishing the things you want and need to do, to the best of your ability”. For some autistic people, “success” will mean “developing ways to communicate my boundaries” (Amanda Baggs has an excellent post on that here). For others, it will mean learning life skills that neurotypical people may take for granted, such as grocery shopping or driving a car. For some autistic people it will look like society’s definition of success – college, a full-time job, a monogamous long-term relationship, etc. What’s important here isn’t what success looks like to others, but what it means to the autistic person. I don’t consider it “success” if the person has been bullied or coerced into accomplishing a task. There are websites out there that will tell you ways to get an autistic person to do things they don’t want to do. This blog will not do that. What I want to do here is help autistic people choose goals for themselves and, perhaps with the help of cooperative carers, to implement supports to help them achieve those goals.
What you will find here: Detailed explanations of visual, sensory, emotional, organizational and other supports that have helped me, either now or in the past. Supports I learned while working in special education classrooms that I implemented in my own life and found to be useful. Examples of ways a support could be modified to help people who have different needs than me. Reviews of apps, websites, devices, and other technological supports I have tried. Discussion of my experience with government supports in the U.S. Possibly book reviews.
What you will not find here: Methods of coercion or force, as mentioned above. Discussion of restricted diets or other autism “cures.” Medical or legal advice, as I am not a licensed physician or lawyer. Political discussion, beyond my own values and beliefs naturally being reflected in what I choose to present here. Dating advice. Anything that can be universally applied to all autistic people, as there are no such things.