All posts by musingsofanaspie

Aspie Traits

Survey: Special Skills and Fun Stuff

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Tuesday!!!!!! I’m so excited. I’ve missed our interactive Tuesdays.

This week’s survey questions are all about special skills and fun things that didn’t quite fit in the other categories. You can answer here in the comments or answer anonymously at Survey Monkey.  Question #10 has 4 parts because Survey Monkey only allows 10 questions on their free surveys and I didn’t want to break this into 2 surveys.

Answer as many as you like. Tell us about your awesomeness. Have fun!

Special Skills and Fun Stuff

  1. What is your favourite thing about being autistic?

  1. Do you have hyperfocus? Do you like it? How long do you focus for, on average?

  1. If you like numbers, what’s your favourite number game?

  1. What is your autistic superpower? (data processing, attention to detail, math, super-concentration, beautiful flapping, lucid dreaming, synasthesia etc)

  1. What cool thing about being autistic do you wish that neurotypical people could experience?

  1. Do you use echolaelia to learn foreign languages?

  1. Apparently, most people feel that their inner self has a particular age unrelated to their chronological age. How old are you inside? Are you older or younger than when you were a child?

  1. If you have a photographic memory, how do you cope with physical locations becoming crowded with all of the history?

  1. Do you have childish or otherwise ‘age inappropriate’ interests or did you at an earlier point in life, such as during your teenage years?

  1. And a multi-parter for number 10 because Survey Monkey only lets me make 10 questions. Do you:

[A] experience synesthesia?

[B] regard yourself as hyperlexic?

[C] think in words?

[D] understand the body language of animals?

Aspie Life

Resuming

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I told myself I’d get back to blogging the Monday after I moved into my new apartment. I figured  a week to recover from moving, ten days to get over the jet lag and fatigue from my trip–that sounded like more than enough recovery time.

Six days past my imagined deadline, I’m finally opening up a new doc. Six days of staring at a blank page in my head (because I refuse to stare at an actual blank page). Six days of idea fragments running amok, refusing to settle. Unchecked, that could go on indefinitely, so I’m gonna do what Gertrude Stein advised:

“The way to resume is to resume. It is the only way. To resume.”

Here I am. Resuming. Filling up the page with words.

I’d like to say this is going to be a post about something but mostly it’s just me looking for a way back in, decompressing.

My executive function has been on the fritz for weeks. Wonky EF makes it hard to write because it messes with my organization and regulation–two things that are pretty fundamental to producing coherent writing.

I’ll spare you the gory details. No one wants to read about a writer moaning about not writing, yes? Yes.

*

After much backspacing in search of a theme, I think what I need to do before I can begin writing again is to clear my cache. So in no particular order, some of what’s rattling around inside my head this past week:

Self-care is a necessity, not a luxury. I’ve been lenient with myself these past few weeks. In the past, I’d considered “going easy on myself” an indulgence. That was a mistake. It led to a lot of unnecessary emotional and mental angst, sometimes even to physical illness, much of which could have been avoided if I’d been paying more attention to what my body needed and giving less weight to how I thought things should be. This deserves its own post.

I’m getting better at being okay with things. There have been a lot of events recently that I’ve had little control over. I’m learning how to struggle less with that lack of control, how to just be with it and how that can be okay.

The Scientist and I have come a long way in one year. We’re both better at understanding my autistic nature, at knowing when to push and when to give way. He does a lot of seemingly-little-but-actually-big-for-me things. I couldn’t ask for a better partner in life.

When I don’t exercise for a stretch of time, I forget how exercise stabilizes my moods. It’s only when I get back into my routine that I remember how much better I feel on the days that I exercise in the morning.

Somehow, even when we’re undiagnosed, we recognize each other. For years I wondered why I always felt a particular kinship with my nephew who is physically and developmentally disabled. Now I know. We have something very fundamental in common.

I can be mindful, but it won’t always work. Sometimes my discomfort rises to a detectable level and sometimes I can only spot it in retrospect.

Mindfulness works when I’m being hit with a sensory 2×4: On the fourth day of our trip, we went on a family picnic. We’d been with people 24/7 for four days and when we arrived at the picnic site, I suddenly felt an intense wave of toomuchtoomuchtoomuch. Recognizing that I was getting overloaded, I told The Scientist I needed to go for a walk. We spent about an hour walking around the park, just the two of us, and when we returned to the family gathering, I felt ready to enjoy the rest of the day (and did). Disaster avoided!

Not so much when sensory ninjas attack : On the flip side, one day soon after moving, I experienced a series of minor discomforts. They accumulated slowly, stealthily, until at dinner I had what The Scientist later characterized as a kind of meltdown. It took both of us until the next day to sort out what had happened and why. In the interim, we both felt that icky sort of remorse that makes you wish life had an “undo” button.

I need to rediscover how to make myself vulnerable enough to write. Some parts of me have closed down over the past few weeks;  I need to tease them back open again. The closing down is a defense mechanism, the emotional armor that allows me to get through challenging situations. It’s kind of like living with the rest of the world on mute. If I don’t intentionally shed that armor, I can get comfortable in it.

Change is hard but I’m getting better at it. Better self-care + being mindful + learning to be okay with things = less stress when things change. I still feel disoriented by change. I still perseverate on pros and cons, what’s good and bad, and better and worse. I still find change exhausting. But I’m learning to like it too, to lean into the adventure and newness and discovery and give myself over to the process without needing to know and control everything. Which isn’t the same as not needing to know or control anything. Not the same at all.

*

I’ve been thinking a lot about what comes next here. We have two more weeks of survey questions. After that, I’m not sure what happens on Tuesdays. I think I’ve covered most of the tests but I could be wrong.

There has been so much good stuff happening in the comments. A reader and frequent commenter has developed and released a cool “to do” list website for folks on the spectrum and others who need some extra help with executive function. Look for a detailed review in my next regular post.

It makes me so happy when someone asks for help or mentions in a comment that they’re struggling and other people leave them some encouraging words. Y’all are awesome.

Also, the developer of the RAADS-R read our comments on the Take-a-Test-Tuesday post and left some comments of her own. How cool is that?

I have lots and lots of ideas for posts. I’ve been thinking for a while now about doing a series on being self-employed/freelancing. Is that something anyone is interested in? It’s a topic I have a lot of knowledge about and one that I think is applicable for aspies because we tend to prefer doing things our own way, often alone. Yeah? No?

I’ve also been toying with a novel that I started writing years ago because I miss writing fiction. Not sure if that will impact my posting frequency. I need to find my writing rhythm again. At least I’ve finally stepped back out on the dance floor.

Aspie Traits

Post #100: A Hiatus and Some Thoughts on Executive Function

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This is my 100th post. Yay!

Around the time I started blogging, a blogger that I was following made her 100th post and I was in awe. I wasn’t sure if I could stick with this blogging thing long enough to make it to 100. I wasn’t sure if anyone would read what I wrote or if I had enough ideas to make more than a few posts.

It turns out that I probably have enough ideas for a thousand posts. Even better, I have an amazing group of readers who I’m enjoying getting to know. I didn’t realize how interactive blogging can be. Again and again I’m humbled by the comments here, by the kind words and the trust. By your willingness to share and be open and support each other and make this journey with me.

And to those of you who read and lurk, I see you, pushing my post view count up day after day. I know you’re out there and I’m grateful. Don’t be shy about joining in the conversation if the spirit moves you.

A Change of Plans

I was going to post one more survey tomorrow before I leave for my Big Adventure, but I’ve decided to wait until I get back. My executive function has been in a downward spiral for the past week. Right now I have the EF of a squirrel.

So here’s The Plan:

  1. 100th post

  2. Put blog on hiatus

  3. Big Adventure Part 1: Go far far away

  4. Big Adventure Part 2: Come home, immediately move to new apartment

  5. Die a little

  6. Recover

  7. Post survey part 4

  8. Start writing again

I have no idea how long 5 and 6 will take so I’m not sure how long the hiatus will last. Maybe close to a month? Hopefully my Big Adventure will give me lots to write about.

I’m sorry to keep messing with the survey schedule. I know unexpected change can be frustrating.

WTF Executive Function?

My Big Adventure is looming large. A major trip followed by a move is a lot to cope with. Massive change, lack of control, uncertainty, sensory triggers, major sleep disruption, yadda, yadda, yadda. I used to think that the uneasiness and disorientation I felt before a big event was anxiety but I’m starting to think it’s actually stress-induced deterioration of my executive function.

The degree of my uneasiness is directly proportionate to how stressful I anticipate an event will be. The next few weeks are 7-9 our of 10 on my stress-o-meter. Not just an evening or a day of level 7-9 stress, but a full two weeks of it. The anticipation I’ve been feeling over the past week has given me a chance to step back and observe my reactions to extreme stress.

Here’s what I’m discovering: the closer I get to the Big Adventure, the worse my executive functioning is becoming. About 10 days ago, I started to notice that I was having trouble concentrating on work. I made myself a detailed schedule, plotting out a reasonable number of tasks each day and allowing myself five days of no complex work leading up to my trip. That helped a lot.

Then I noticed that I was having trouble staying organized. Moving and preparing to travel overseas involves a lot of planning. Random details were constantly flying around in my head, especially things I absolutely shouldn’t forget. Turning the utilities on/off. Buying dog food. Changing my address on this account and that account and some other account. Packing tampons and melatonin and my laptop cord. Picking up moving boxes at the grocery store. My passport!

Finally, I took out a notepad and wrote everything down–lists, important dates, schedules, reminders. The notepad sits on the kitchen counter and every time I think of something, no matter how trivial, I write it down.

Gradually, I started to lose interest in communicating. I’ve mostly stopped keeping up with social media, email, etc. Soon after that, I started to struggle with writing. Just getting through this fairly straight forward post is taking me forever. I keep losing track of thoughts and going down blind alleys. (There also seems to be something wonky about the tenses here, but IDK.)

I’ve been spending a lot of time this week doing stimmy, low-cognitive-demand things, like playing Temple Run, taking long walks and being silly with the dog.

I’ve been double and triple checking everything I do, especially for work. Still, I find myself making a lot of little mistakes. Putting my empty cereal bowl in the fridge instead of the dishwasher. Putting clothes in the dryer but not turning it on. Not realizing I’m wearing my shirt inside out until the end of my run.

So this feeling I get–disconnected, disoriented, unfocused, withdrawn, restless–this thing I’ve been thinking all these years was anxiety is looking more like a deterioration of my executive function. Thinking about it in that way has removed a layer of stress. It also explains why my “anxiety” symptoms only match a small subset of typical anxiety symptoms (restlessness, difficulty concentrating, becoming less social, fatigue).

Instead of worrying about it and beating myself up for not coping well and powering through it like I’ve done in the past, I’m being kind to myself. I’m making accommodations, acknowledging that I shouldn’t be doing complicated work projects right now, taking more breaks during the day, asking for help/advice where I need it, reminding myself that it’s temporary.

By not pushing myself, I feel like I’ve deescalated my stress quite a bit. I’ve also been able to avoid negative coping mechanisms like perseverating, withdrawing or being controlling. This makes for a happier marriage and a happier me.

See You on the Other Side

Assuming all goes as planned, I’ll see you in 3-4 weeks. Until then, be well.

Diagnosis

Adult ASD: My Evolving Sense of Self

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This is the final part in the “I Think I Might Be Autistic” series. 

In addition to the new set of questions that my diagnosis raised, it’s also forced me to think about my identity and how I want to own being autistic. I wrote a bit about identity very early on in this blog. At the time I challenged myself to revisit the subject in the future, after I’d had more time to educate myself and think about the labels I’ve been given.

In the past couple of months, I’ve been using autistic and aspie interchangeably to refer to myself. Not because the DSM-V will be eliminating Asperger’s but because it feels more comfortable. I’ve also been learning about the social model of disability, which says that disability is created by the way society is organized rather than by a person’s differences.

My previous concept of disability had centered on the medical model, which says that people are disabled by their differences, which need to be fixed. Because I was resistant to the idea of being seen as someone who is “less” or “defective” I was resistant to thinking of myself as disabled. The social model of disability has given me a much more positive way of thinking about disability. It looks at a person’s disability and asks what kind of supports that person needs, not what’s wrong with them.

The social model feels like a good fit for Autistic people. I don’t want to be fixed but there are some things that would make my life easier.

Learning to be Autistic

Since I’ve begun blogging, I’ve noticed that I have a constantly evolving sense of self. The more I write and read and talk with other people, the more my understanding of who I am shifts and solidifies.

Little by little, I’m learning what it means to be autistic.

You may notice that I generally use “small a” autistic rather than “capital A” Autistic in my writing. That’s intentional, not an oversight.

Autistic refers to Autistic people as a cultural group. For example, I consider my blog Autistic space–a safe space where Autistic people can gather to share information about how we experience the world. I make an effort to participate in Autistic advocacy events online, like the recent flashblogs. But I don’t feel ready yet to be an advocate in the sense that many other Autistic people are.

The funny thing is, I never thought about being advocate at all until recently. I started blogging as a way to process this huge new self-discovery. Writing has always been my primary way of processing. Big thing to process equals a need to write hundreds of thousands of words in response.

As I got involved in the online blogging community, I slowly began to realize that like it or not, I am an advocate. That’s something that I’ve come take very seriously. Words have consequences. We can lob them like rocks or wield them like a scalpel; we can use them to soothe or incite. Mostly I want to use them to understand and to promote acceptance–self-acceptance and acceptance of Autistic people in general.

I feel like I’m still learning to be autistic. This is personal for me right now. Perhaps this is my way of being an advocate–the constant dissecting and researching and writing and explaining and oversharing.

At some point I’d like to also feel comfortably Autistic, but for now, discovering my “small a” autistic self is an all-consuming process.

Health, Uncategorized

Some Rambling about Insomnia, Melatonin, Nightmares, Anxiety and Autism

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Last November I wrote about my insomnia and nightmares. Since then, I’ve been conducting some experiments. Here’s an update on what I’ve learned:

Sleep Study

In early December I started taking melatonin and I immediately felt like I was sleeping better. To be certain I wasn’t just imagining that my sleep had improved, I conducted a 2-week sleep study on myself.

The Scientist hooked me up with an armband that monitors sleep quality. I wore it while I slept for two weeks, one week on the melatonin and one week off. Thanks to the software that came with the armband, here’s a graphic representation of how well I slept during each of the weeks:

sleep_nomelatonin
Dark gray areas=sleeping; Light gray areas=lying down, not sleeping; White areas=not lying down/sleeping
Dark gray areas=sleeping; Light gray areas=lying down, not sleeping; White areas=not lying down/sleeping
Dark gray areas=sleeping; Light gray areas=lying down, not sleeping; White areas=not lying down/sleeping

I was surprised by how frequently my sleep is interrupted on any given night. There is one night out of each week that I got a long uninterrupted period of sleep. On most nights the longest period of continuous sleep is a couple of hours or ninety minutes. I knew that my sleep patterns were disrupted, but I didn’t know the problem was this bad.

Some statistics:

Sleep efficiency (time spent sleeping/time spent lying down)

  • with melatonin: 82%

  • without melatonin:  80.5%

Average hours of sleep per night

  • with melatonin: 7 hours 10 minutes

  • without melatonin: 6 hours 45 minutes

I also found it interesting that I have to spend 9-10 hours in bed to get 8 hours of sleep.

So does the melatonin work? I averaged 25 minutes more sleep per night when I was taking it, which added up to an additional 3 hours of sleep for the week.

Melatonin

Since doing the sleep study two months ago, I’ve continued taking melatonin and it feels like my sleep has continued to improve. There are still nights where I only get 5 hours of sleep (last night, in fact) or I’m wide awake at 3:30 AM, but they’re less frequent. In general, I fall asleep more quickly. The melatonin creates a pleasant drowsiness that makes it easier to fall back asleep when I wake up during the night. Some days I feel a little sleepy in the morning, but that fades after I exercise, which I do first thing after getting out of bed.

If you’re considering taking melatonin as a sleep enhancer, there are some things you should know:

  • Melatonin makes you sleepy. Take it only at bedtime. I take 5 mg about 30 minutes before bed.
  • High doses of melatonin have been associated with increased depression and psychosis in people already suffering from these conditions. Also, women who are pregnant or trying to become pregnant, nursing mothers, and individuals with cancer, leukemia, lymphoma, multiple myeloma or Hodgkin’s disease should not take melatonin. It’s a good idea to consult with your doctor before starting the use of a melatonin supplement, especially if you are being treated for any other condition or taking any type of medication.
  • In the US, you can buy melatonin over-the-counter at stores that sell vitamins and supplements. It comes in 0.75 to 5 mg doses. Taking the smallest effective dose is safer.
  • Melatonin makes you feel drowsy and relaxed but not drugged, so you should still be able to easily wake if necessary, for example to respond to an emergency call from a family member.
  • It’s often recommended that you take melatonin every other day so you don’t inhibit natural production. (Personally, I think my natural production is already screwed beyond all hope and always has been, so I take it every day.)
  • Some people take melatonin for a few weeks then take a week off on the belief that it loses it’s effectiveness if taken continuously. I’ve been taking it for 5 months with only two weeks off (one due to illness and one for the sleep study). I haven’t seen a drop in effectiveness.
  • If you feel groggy in the morning, try reducing the dosage.
  • Some people experience nightmares when taking melatonin. (I’ve found that my nightmares have lessened–more on that in the next part).
  • Other side effects can include: mild headache, upset stomach, lower sex drive and depression. Again, reducing dosage can alleviate side effects. Most people don’t experience any side effects at a dosage of 1 mg.
  • Some people experience rebound insomnia when they stop taking melatonin. I stopped twice for about a week each time and didn’t feel like my insomnia was any worse than it had been before beginning the melatonin. One way to avoid potential rebound insomnia is to taper off, using lower dosages over 1-2 weeks if you decide you no longer need to take it.

My Nightmare Journal

When I wrote about nightmares, I suspected that they were connected to unprocessed bouts of anxiety. To identify trigger events, I started a log of my nightmares along with some details like possible triggers and whether I’d felt like I processed the triggering event. My goal was to become more aware of triggers and spend time working through them during my waking hours rather than letting my sleeping brain get creative with them.

According to my log, here is # of nights that I had nightmares each month:

  • Nov 15th-30th: 4 nights
  • December: 10 nights
  • January: 3 nights
  • February: 1 night
  • March: 0 nights
  • April : 0 nights

I know what you’re thinking: You did it! You learned to identify your triggers and process your anxiety!

Well, no. I tried that all through December and failed miserably. Then in January, I said “fuck you, anxiety” and I wrote this.  And hey, the nightmares disappeared!

Two things seem to be at work here. First, melatonin helps me sleep more deeply, which makes my dreams harder to remember and less vivid. Of the 14 nightmares I had after starting on the melatonin, I rated 6 mild and 2 moderate. That alone is a relief.

The other thing that’s happening? I’ve become autistic in my sleep! On January 23rd, I got my flap back in a dream. After that, I had only 2 nightmares and 1 of them didn’t fit my typical nightmare profile at all. I’ve started dreaming in an entirely different way.

In my dreams now, I often tell people that I’m autistic or consciously think of myself of as autistic. That’s completely new. Twice, when it seemed like someone was going to attack me, setting off a typical nightmare scenario in which I had to physically defend myself, the police showed up and took the threatening person away! That’s never happened before. Another time, I was lost and couldn’t find my new (in the dream) apartment. I told some people who worked in the building that I was autistic and couldn’t remember where I lived and they all offered to help me. That never happens in my dreams either.

This is really exciting. I feel like the way I’m thinking about myself and my relationship with the world around me is changing in a profound way. The changes to my dream life are concrete evidence of this.

That’s not to say I don’t have any disturbing dreams. I have plenty. I dream that I’m late for important events. That I need to call 911 but no one answers or the phone doesn’t work. That I need to run  but my legs don’t work. That I’m blind. That I’m in school but don’t know my class schedule. That I have a baby but keep forgetting to care for it.

I also still have weird, inexplicable dreams. That I’m playing golf, but in the opposite direction of everyone else on the course. That I’ve accidentally rubbed the ink from my tattoo off and when I check it in the mirror I notice that I’m also pregnant.

All of those dreams are unsettling, but they aren’t nightmares. I don’t wake up sweating with my heart pounding out of my chest. I don’t cry myself awake. I don’t startle awake because the dream has become so intensely physically painful that I can’t stand it anymore. I don’t spend most of the next day trying to forget frightening images. I’m not reluctant to go to sleep the next night.

I’m okay with having occasionally unpleasant dreams, as long as the really bad nightmares stay away. Will they? Who knows. I’m in a fairly stressful period right now, one that would have typically triggered a nightmare cycle in the past. So far, nothing.

If they return, I’ll be back to ramble some more.

—–

A related link about sleep disturbance and ADHD that talks about melatonin and light therapy as ways to lessen insomnia: findings from a study about ADHD and sleep dysfunction

Asperger's Tests

Survey: General Coping Strategies

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Welcome to week 3 of our survey.

I’ve slightly revised the schedule due to some additional questions that were posted over the weekend. This week we’ll do general coping strategies. Next week we’ll do special skills and fun stuff. When I get back from my great big adventure some time in May, we’ll do acceptance and gender/sexuality/body image.

You all probably know the drill by now, but in case anyone new wanders in: answer as many questions as you like, here or anonymously at Survey Monkey. Talk amongst yourselves about the answers if you like.

Also, you might want to have a look at the last two weeks’ surveys on relationships and sensory sensitivities/work and school strategies. Answers to both are still coming in!

Take the Survey Monkey version here: general coping strategies.

Although some questions reference diagnosis, this is open to all those who identify as on the spectrum (professionally diagnosed, self-diagnosed  and suspected aspies/autistics/people with autism).

General Coping Strategies

  1. What positive changes did you make to your life after your diagnosis?

  1. Over-apologising/apologising as a reflex action: Seriously, “sorry” has become my standard greeting to people at uni. Does anyone else do this? Has anyone managed to break the habit? How?

  1. How do you all describe what it’s like to be you to someone else? What do you compare these things to in a way that makes others have that aha! moment? more details here

  1. Does anyone else have issues with conflict/arguments/shouting matches in front of you? How do you deal with this?

  1. Does anyone else have trouble with “future planning”? a little more info here

  1. How do you stay on top of cleaning? What contextual cues do you use to get you to do things around the house?

  1. Do you catastrophise and if so, have you strategies for managing it?

  1. Do you experience emotional distress, such as depression and grieving, in unusual ways, such as increased sensory challenges or physical pain?

  1. Do you have trouble speaking at a normal pace? Do you have any tips for modulating your voice?

  2. Have you experienced chronic fatigue or chronic pain? Do you have other chronic illnesses? If so, do you think autistic traits such as poor emotional awareness and sensory differences such as oversensitivity to pain or muscle discomfort have any effect on these?

Diagnosis

Adult ASD: Disclosure

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This is part 13 of the “I Think I Might be Autistic” series.

Disclosure, it turns out, is a sticky issue. My first instinct was, “This is great! I have an explanation for my difficulties. I’ll tell everyone and they’ll be as happy about it as I am.”

Er, no. Disclosure makes people uncomfortable. Most people don’t know what to say. Many will reassure you that it makes no difference and then proceed to treat you differently. Even in the people who are very accepting, you may notice the occasional patronizing statement or doubt about your competence–little shifts in the way this person sees you now that you’re autistic.

Not that you weren’t autistic before, of course. But handing a label as loaded as autistic to another person changes things, like it or not.

Who to Share Your Diagnosis With

Some people openly disclose to everyone. Others share only with close friends and/or family. Some people disclose in stages, starting with an inner circle and working outward as they feel more comfortable.

As you think about disclosure, keep one thing in mind: it’s irrevocable. Once you share your news with someone, you can’t unshare it. You also can’t guarantee that the person you’ve shared with will keep your disclosure private. They may inadvertently or intentionally “out” you to someone you aren’t ready to share with.

Still, many of the people in our lives already know that we’re a little different. Generally, most people choose to share their diagnosis with the people closest to them. This might include immediate family, close friends and/or a significant other. If you prefer not to share beyond this inner circle of people, be sure to make it clear when disclosing that your diagnosis is private information.

disclose1

Beyond your inner circle, it may become harder to decide who to share with. Obviously, you don’t need to notify casual acquaintances but what about work colleagues, supervisors, professors or others that you interact with regularly?

It may help to consider the consequences of disclosing versus not disclosing. If you’ve only recently been diagnosed then you already have a good idea of what not disclosing looks like. Are you happy with the current situation? Would disclosing allow you to ask for needed supports or accommodations? Is it possible that disclosing would create more risks than benefits?

There are real dangers to disclosure in some situations. You can open yourself to discrimination and bias, especially when it comes to work, school, or your parenting rights. I’m not writing this to frighten anyone. Just be sure you’ve done your homework and thought through the possible consequences before choosing to disclose your diagnosis. If you’re unsure, consider talking with a trusted friend or mentor before making a decision.

What to Say

There are two ways to go about disclosure. You can make a full disclosure, using the words autistic, Asperger’s syndrome or autism spectrum disorder. If you decide to go this route, be prepared to do some education. There’s a good chance the other person’s first reaction will be “but you don’t seem/look/act that autistic” or “I never would have guessed” or some other similarly awkward reply.

Preparing a short script describing autism as a neurological condition that impacts your communication, socialization and sensory processing can be helpful. The operative word here is short. You don’t need to give the person a TED talk on autism. Just share a few facts relevant to your situation, including what kind of accommodations or supports you’re requesting.

If you aren’t going to request accommodations, it’s probably best not to disclose in a work situation, unless you’re the kind of person who is confident with being out to everyone. Because of the stigma associated with ASD, the risks of workplace disclosure can be significant and irreparable.

There is always the possibility that disclosure will bring with it the subtle, hard-to-prove sort of discrimination that doesn’t rise to the point of being actionable under law. Although autism falls under the purview of the Americans With Disabilities Act, human social interaction is unpredictable and fraught with gray areas.

disclose2You may be able to request accommodations or supports without using the word autism, if that feels safer. For example, if you have a job doing data entry in a noisy workspace, you can explain to your supervisor that wearing noise canceling headphones will enhance your concentration and make you more productive.

If this request is well received, you don’t need to disclose your disability if you prefer not to. If it’s not received well, you’ll likely have to disclose that you’re autistic to gain accommodations under the Americans With Disabilities Act. It’s a good idea to do some research about your rights and your employer’s obligations under ADA before proceeding. For example, here is a list of common types of accommodations.

While ADA provides a minimum set of rights and obligations, some disability-friendly workplaces may be willing to do more to accommodate employees. On the other hand, be aware that small businesses (fewer than 15 employees) are not subject to ADA requirements. That doesn’t mean that a small business won’t be willing to work with you on accommodations, just that they aren’t required to under law.

When to Disclose

There is one more caveat to the choice not to disclose. If you don’t share information about your disability upfront, sharing it when you find yourself in a bind will probably not be helpful. For example, two months into a new job, your supervisor calls you into his office and says you’re being put on probationary status due to poor performance. This is not the time to disclose that you’re struggling because you really needed to get all of your instructions in writing or you need to have tasks broken down into smaller elements with more closely supervised due dates . . . because you have autism.

If you know you’ll need accommodations to successfully complete work or school tasks, ask for them upfront. If you discover that you need accommodations in the course of doing a task, request them as soon as possible. Don’t wait until you’re on the verge of disaster. This will be seen by most people as “using your disability as an excuse.” Fair or not, that’s how it will be perceived, possibly making it harder to gain the needed accommodations or even to keep your job in the long run.

There is also a special situation in which you may need to unexpectedly disclose your condition: an emergency. Some autistic people carry a card or letter in their wallet briefly describing what ASD is and how it might affect their responses in an emergency. If you lose speech, respond negatively to being touched by strangers, or have sensitivities to flashing lights or loud noises, this information can be especially helpful for law enforcement and other first responders. This type of disclosure can prevent police or emergency medical personnel from mistakenly thinking that you’re drunk or intentionally uncooperative.

How to Disclose

I’m going to step backward here a bit and address this to those who are diagnosed and those who aren’t because disclosure is something that I found taking place at all stages of the journey. In the very early days of learning about ASD, you may find yourself needing to talk about your suspicions or realizations with someone close to you. As you move through the self-discovery and diagnostic process, you may need to talk with family members to gather information about your childhood or confirm details about yourself.

Disclosure doesn’t only happen after a diagnosis. It can take place in stages, along a continuum. So here are some suggestions that may apply during different stages of the process:

  • Request a formal meeting or schedule a conversation. This signals that what you intend to say is important. Most appropriate for work and school related disclosures. Also good for situations where you’re concerned that the other party may not take you seriously.
  • Raise your diagnosis informally in conversation, when the opportunity arises. Probably more appropriate for those you anticipate being supportive.
  • Share an article about ASD. This is a good way to open the “does this sound like me?” conversation with someone close to you. 
  • Send an email or letter disclosing your diagnosis and sharing relevant background information about ASD. Good for disclosing to people you find hardest to tell, for example family members who you’re concerned might have a critical reaction. 
  • Share a form letter or informational flyer. An efficient way to share key facts in situations like emergencies or when requesting accommodations from public places (like a theme park). The book Ask and Tell has some good examples of form letters for specific situations.
  • Enlist an ally. If you’re faced with an especially hard disclosure situation, an ally can help you deliver the news, answer questions and/or offer moral support, especially if there’s a chance you might become nonverbal during the encounter.

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Why Are You Disclosing

Ultimately, this is the most important question. Before you disclose to someone, ask yourself what you expect to happen. Are you disclosing to ask for accommodations or understanding? Are you seeking acceptance and support?

What if you don’t get what you’re seeking? Sadly, this is often the outcome. Disclosure is hard. It requires a certain amount of fortitude, not just for the act of disclosing but for standing up to all that follows in the wake of it. Think it through, go slowly and enlist support from trusted people in your life.

Up next: An Evolving Sense of Self

Aspie Traits

Kindred Souls

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Four years ago, The Scientist and I adopted a dog. This is Emma, a few days after we brought her home:

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Emma was a rescue. She spent nearly 3 months in the shelter system. The week we adopted her, she was featured in the shelter’s weekly newspaper ad that highlights the hard cases. We didn’t know that at the time.

When we visited the shelter, The Scientist and I agreed to walk around separately and then compare notes on the dogs that seemed like good possibilities. Emma was on The Scientist’s list; I hadn’t noticed her. Most of the dogs in the shelter come running to the door of their enclosure when a person walks by. Emma sat in the back corner, wary and watchful.

But that was okay. I understand what it means to fear change.

She fit my criteria (female, medium-sized, short-haired, not hyper or teething or a submissive piddler) so we took her out to the shelter’s backyard for a visit. As soon as we let her off the leash, she ran to the opposite side of the enclosure, as far away from us she could get.

We sat down on the gravel and waited. Eventually she came over to tentatively check us out. I didn’t realize at the time what a huge step this was for her. After talking it over, we decided to take her home.

We had no idea what we were getting into.

Shortly after arriving home, I took her out into our walled-in backyard. When I turned on the hose to water some newly planted trees, she jumped the three-foot wall and bolted.

All I kept thinking as I tried to lure her close enough to grab was, “If I call the shelter and report her missing on the same day we adopted her, they’ll never let me have another dog.”

I finally managed to coax her back into the yard. In the coming days, every time I turned on the hose she bolted over the wall. When I unloaded the dishwasher, she ran off to hide in another room. When the laser printer started up, she fled from my office like a bomb had gone off. When I picked up a ball to throw it, she cowered and hid under a bush.

But that was all okay. I understand what it means to have seemingly irrational triggers.

We took her to the vet for a check-up. One of the first things the vet said was, “You need to start socializing this dog immediately or she’ll bond exclusively with you and won’t be able to tolerate anyone else.”

At the time, I was having trouble imagining her bonding with anyone. She was content to spend her days alone in the yard. Some nights it took me a half hour or more to get close enough to leash her and bring her inside. Even when it was snowing, she preferred to dig a hole and curl up in it, oblivious to the snowflakes accumulating on her. Once I got her inside (she refused to let the Scientist get close enough to leash her), we had to lie flat on the floor and be very quiet to get her to approach us voluntarily.

But that was okay. I understand what it means to be slow to trust strangers.

She was an exceptionally good dog. She climbed on the couch once. I told her to get off. She never did it again. She never chewed up a shoe or a sock or anything else that wasn’t a dog toy. She rarely had an accident inside. What she did do–and still does when she’s anxious–is pace. Relentlessly. In circles. She also compulsively dug holes all over the yard.

But that was okay. I understand what it means to engage in repetitive comforting activities when you’re anxious.

I researched how to socialize a traumatized dog. I rewarded her for channeling her stress into her chew toys, for smelling objects that frightened her, for making eye contact. We enrolled in puppy kindergarten. For the first six weeks, we had to carry her into the classroom because there was no way in hell she was going through that door voluntarily.

It was too noisy, too unfamiliar and there were too many strangers. It took both of us to manage her during the hour-long class. We were all exhausted when it was time to go home.

But that was okay. I understand what it means to struggle with new situations, strangers, and loud noises.

I read and read. I was becoming an expert on dog socialization. One book after another emphasized the importance of routines in making a traumatized dog feel secure. A dog that knew what to expect was a happy dog.

This was not news to me.

Gradually we got to know Emma and she got to know us. We discovered that she has some scars–one of her ears never grew (it’s all scar tissue), her muzzle is scarred, and her right rear hip bone sits half out of the socket, poorly healed from some unknown injury. We don’t know her early history, but the evidence points to a rough start in life.

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We also discovered that she loves to play and is very affectionate with people she’s grown used to. She warms up to friendly strangers more quickly these days. She’s still terrified of children, but has learned to politely share an elevator, as long as everyone stays on their own side.

She’s a loyal guard dog, an enthusiastic running partner and she instinctively knows when one of us needs comfort. The last time I had a meltdown, she came and laid her head on my cheek as I was curled up on the floor, crying. She reminds me to feed her if I forget and nudges at my elbow to get me to take a break when I’ve been at the computer too long.

She’s come to understand what I need in much the same way I learned to understand her in those early weeks and months.

They say dogs resemble their people–or is it the other way around?–and as you’ve probably guessed, Emma and I are kindred souls. I wonder if The Scientist picked her out because she reminded him of me.

Asperger's Tests

Survey: Sensory Sensitivities and Work/School Strategies

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The response to the relationship survey last week was fantastic! People continued adding answers all week, so you might want to pop back there and read the latest responses if you haven’t.

This week we have 8 questions about sensory sensitivities and 6 about work/school. You can answer here in the comments or anonymously at Survey Monkey. I’ll bring the Survey Monkey answers over and paste them as comments.

A reminder: this is open to all those who identify as on the spectrum (professionally diagnosed, self-diagnosed  and suspected aspies/autistics/people with autism). Answer as many or as few questions as you choose. Tell us about yourself. Have fun!

I’m so excited by how many answers each person got to their question last week. Y’all are awesome. On to the questions . . .

Survey Monkey has a 10 question limit per survey so I had to make 2: sensory sensitivities and work/school strategies.

Sensory Sensitivities

  1. Does anyone else in the adult autistic blog-munity have issues with temperature sensitivity? If you have issues with heat, how do you cope with summer weather? With the effects of exercise? more details here

  1. For those who have hyper-sensitivity to light and sound: How do you cope when you find yourself starting to get overwhelmed, but can’t leave immediately? How do you recognize when you’re starting to hit that point of sensory overload? How do you deal with the aftereffects of the overload – and what aftereffects do you notice? How long can it take to deal with the aftereffects? more details here

  1. What texture sensitivities do you have? What specific textures are bad? How does your body react to them? more details here

  1. Bras. Do you also find them very stressful to wear? If so, have you come up with a solution to that?

  1. Shoes. Do you have difficulty finding comfortable shoes? What is your preferred choice of footwear?

  1. Does anyone else find showers almost physically painful?

  1. About sensory issues, how did you react to a overload and did you know at first why you reacted this way? Or was it simply a reaction without really know why you were annoyed/angry/overreacting?

  1. How many of us here find earplugs and Mp3 player to be important when going out? Does the stress level go up when you can’t have it on when being stuck in crowed or noisy places?

Work/School

  1. What kind of job would be right for your own ‘brand’ of autism?

  1. If you work, how do you cope with your errors in understanding they way that most humans think and behave, not just non-verbal language, but office politics and similar inexplicable behaviours?

  1. I get very anxious about interviews – what strategies do you have to cope with these?

  1. How do you deal with being bullied at work? (or anywhere else)

  1. How do you get a job if you can’t use the telephone?

  1. Have you ever asked for accommodations at work or school? How did it go?

Diagnosis

Adult ASD: Moving Forward After Diagnosis

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This is part 12 in the “I Think I Might Be Autistic” series.

The decision to pursue a diagnosis was difficult to make. There were times when I doubted my choice. Was it necessary to have a professional diagnosis? Would it make a difference?

Having gone through the process, the answer to both questions is yes. I have a strong need for closure. I don’t deal well with gray areas and uncertainty. That piece of paper that says, “299.80 Asperger’s Syndrome” closes off an avenue of doubt for me.

It also allows me to say this: if you think you’re an aspie or autistic–if you’ve done the research and talked to other people on the spectrum and see yourself in them, if you’ve identified a long list of autistic traits in yourself and come to the conclusion that ASD describes your particular set of neurological differences–then you are very likely correct. With or without an official-looking paper diagnosis, I think we are our own best judges of our neurology.

So, yes, getting diagnosed was worth the time, effort and expense for me. Yes, I’m fortunate to be in a position to have access to the resources I needed to pursue it. Yes, I also believe that self-diagnosis can be valid.

One of the reasons I’ve written in detail about the process is because I know that not everyone can afford or has access to a diagnosis. Not everyone is ready to pursue getting diagnosed. Not everyone has the executive function or the emotional resources to run the gauntlet of medical and mental health providers. Not everyone needs or wants a formal diagnosis.

But I think everyone who has bothered to read 11,000+ words of this series probably shares my interest in self-discovery. We know that we’re different and we want to know why and how and what that means. I spent less than 8 hours with the people who diagnosed me, but I’ve spent hundreds and hundreds of hours researching and writing about being autistic. That, ultimately, is what matters most to me.

My diagnosis, though it allowed me to put one set of questions to bed, has raised plenty of others.

  • Are there things in my life that I want to change?

  • Should I go for therapy?

  • Who should I tell?

  • How?

  • What does it mean to be Autistic?

These aren’t questions I can answer conclusively, even today.

Time to Change?

Once the newness of the diagnosis began to wear off, I was faced with the question of what to do with this new knowledge. I have a 10-page report from the neuropsychologist listing my cognitive strengths and weaknesses. I’ve become more familiar with and conscious of the areas where I struggle.

I’ve been told, not for the first time, that therapy would be beneficial. It’s an idea that I keep kicking to the back of the line, intent instead on rigorous self-examination. Like everything else I write about here, that’s my personal choice and not necessarily one that’s going to be right for anyone else. I’m not even sure if it’s entirely right for me.

Slowly, I’ve been working at making specific changes. I’ve written about being more flexible, allowing myself to stim more, trying to reduce my insomnia and nightmares, learning to translate from aspie to NT and back, and exploring my emotions.

I’ve also written about the things I’ve decided need accepting rather than changing: my lack of empathy, my anxiety, my tactile defensiveness, my love of being alone. My litmus test for change vs. acceptance is simple: is the cost of changing this thing higher than the benefit I’ll gain from the change?

Some changes require little more than mindfulness or occasional reminders; other changes require me to move out of my comfort zone and face some hard truths. The outcome–or at least the goal–is that I struggle less with some aspect of my life. Those are the good changes, the ones I’m eager to make.

Other changes feel pointless to me. These are often the changes that would make other people more comfortable by making me seem less odd. With all of the things I could be working on, I don’t see the point of investing my limited energy in those types of changes.

In fact, since getting diagnosed, I’ve become more echolalic, more stimmy, less conscious of censoring myself. I’ve become gentler and more compassionate with myself. I push myself less; cut myself slack where I wouldn’t have before. Not because I see myself as disabled, but because I see myself as a person in need of care.

I never really gave much thought to self-care before. I often demanded a level of performance and perfection from myself that I wouldn’t have expected from another person. I was so busy pushing myself to be better, to get things right, that I often neglected to be kind to myself.<

Perhaps that’s the biggest change I’ve made so far: I’ve resolved to be kind to myself.

Obviously, these are very personal decisions. The constellation of things that I choose to work on changing is unique to me. It continues to shift and grow. There are days when I think, “screw this, why should I change anything?” There are days when I think it would be nice to be “normal” for a day, to not have to struggle so much with simple things.

Then there are days when being autistic recedes into the background, not because I’m less autistic, but because I’m more comfortably autistic. Little by little, I feel myself healing old wounds, integrating the shiny new realizations, and becoming more myself.

That’s the best change of all.

Up Next: Disclosure