Subscribe Via RSSAWN Featuring Profiles of Females on the Spectrum
As a tie-in with our Pepsi Refresh Project campaign, the Autism Women’s Network is featuring a post by an autistic female (or her caregiver) each day in September at our AWN FAIM blog.
The idea came to me after I thought about that connection I always make with the parent of a girl with ASD or a woman with ASD, and how there are so few places for people like us to run into each other and know that we exist. My life has been changed for the better after meeting all these autistic women and just knowing that I’m not alone in the world at all!
If you know someone who you think should tell their story, please email me to nominate them (or yourself) – the sooner the better. We’d like to feature the stories of all ages and points on the journey. Parents, what supports do you hope to see for your daughters? For yourselves as caregivers of girls? Women, what supports have been or would be helpful for you?
And please remember to vote daily throughout September so AWN can provide these supports. A tiny effort on your part can help reduce abuse, boost self-esteem, increase achievement and employment, and so much more!
When Major Life Changes Disrupt Your Routine
If you had to think back on the biggest changes and transitions in your life, you might find a major move among them.
That’s where R and I are right now. We’re selling our home, and while I knew it could be challenging, I never imagined it could bring this kind of upheaval into our lives! This kind of transition can bring out the best or worst in a family – we can let the stress get to us and fight about it, or we can act as a team.
Look for alternatives and accommodations.
Having a daily routine is a huge deal to me because running on autopilot frees up mental processing ability to do other things, like having conversations and executing complex tasks. I used to know pretty far ahead of time when I’d be off my routine, and now I can’t see more than a day out what I’ll be doing.
Since we had decided from the beginning that our happiness was a priority, we talked to our agent and made sure we were notified about showings a day ahead of time, and that we’d get emails (i.e. visual communication). We have the option to confirm after getting the email, or turn it down if it doesn’t work for us. It made me feel better to know that we could make the process work with our needs and lifestyle.
Please don’t let anyone tell you that the way it’s been done for eons is the way you have to do it too. Times have changed! ASK about your options before accepting the status quo.
Establish new routines and structure – don’t tolerate chaos!
It’s also been tough because we had to clear out just about everything in our already immaculate home. Not only is it hard putting things away and taking them back out every time someone comes through our home, but I hate looking for something and not being able to find it. You know me – if it isn’t exactly where I left it (and the twenty times before that), I’ll never find it!
It occurred to me that if I’m such a routine-based creature, I might as well work with my strengths and start developing new routines as soon as possible.
- At first we were cramming things into every available space in cabinets and closets. So I designated an area in each room where everything would go – that way I’d know exactly where to look.
- We also instituted a new rule: Put it away as soon as you use it. We even had to apply this rule to soap and shampoo, which sounds ridiculous, but it cuts way down on anxiety and wasted time.
Doing the same thing every day and knowing exactly where everything goes eliminates anxiety and again frees up mental processing space.
Use visuals.
I love lists, and having checklists on my iPhone makes it so much easier to rest easy that I haven’t forgotten anything. Before I would do one thing, spend a few minutes trying to think of the next thing, and waste a whole lot of time. Now I can breeze through my list in less time and stop worrying that I’ve forgotten anything.
This list was made on an app called Paperless. It allows me to check each item off and then reset the list when I’m done.
I’d like to try a visual schedule on Stepstones because I can include photos of each step, but the interface is a little less than intuitive for me and I haven’t been able to delete the default schedules which I’m not liking.
We’ve been especially insistent on using visual communication and having photos of everything throughout this process because I’m so visual. It hasn’t been a huge obstacle really; it’s just that I don’t want to move forward with anything until I’ve seen it in writing, been in a physical space, or seen many, many photos or renderings.
These strategies can work for you beyond moving – I wish I’d known this during other transitions in my life, like going off to college or starting a new job. It takes just a few extra minutes to sit down and look how you can organize scattered tasks into a daily routine. If you put in the tiny effort every day to stick to your new routine, you’ll be feeling at ease again in no time.
SmartKnitKids Seamless Socks: Not Just For Kids!
You know what’s a good thing? When a company designs clothing for special sensory needs. You know what’s an even better thing? When that company includes adult sizing in their product line!
I knew Smart Knit Kids from Twitter, so when I saw their booth at the ASA conference I had to walk over and say hi. It’s hard to miss their bug logo! (Though for the longest time I assumed it was a frog. Yes, I can name just about every kind of spaniel breed but can’t distinguish between a frog ang a bug – go figure.)
At first I assumed they’d tell me they only carried children’s sizes, so imagine my surprise when they told me and a friend I was with that they made socks in our sizes. Not just children’s socks that might fit us if we were small enough (like some other companies), but actual adult sizes. Finally!
They kindly offered me a pair to try, and since they only had kids’ sizes with them at the booth I took home an XXL pair in purple.
Sure enough, these socks are soft and seamless. At first I kept wiggling my toes to “look” for the seam, as if I’d put my socks on the wrong way!
I liked that the material felt substantial without being itchy or overly heavy; I could imagine wearing this in cooler weather. (According to the website, the material also wicks away moisture to prevent “stinky feet”.) There’s also a special stitching at the top that eliminates the nasty band or cuff that always rubs or squeezes your leg. And somehow the sock stays on.
If I had one concern, it’s that the socks didn’t fare very well in the dryer, despite the instructions to “simply machine wash & tumble dry warm”. Maybe it’s my dryer, which tends to fry everything. I’ve also noticed fuzzage on every pair of socks I’ve had in this weight so it’s probably nothing to worry about. (ETA: The inside is a different texture from the outside and doesn’t seem to accumulate fuzz.)
Adult sizes (Smart Knit Big Kids) come in black and white, and kids’ sizes (which fit a women’s size 7 generously) come in a few extra colors. They don’t have a defined heel, so the sizes aren’t quite as precise as traditional socks!
Reader Question: Autistic and Going Through Airport Security
My friend wrote to ask if I could give a few tips on travel, especially going through security. This question has special relevance to the autistic community, because many autistic traits can be mistaken for suspicious behavior (avoiding eye contact, not wanting to be touched, refusal to follow directions, escalating into hostility, etc.). What makes the process especially challenging is that TSA checkpoints are usually brightly lit, bustling, and lack clear instructions.
Yes, I have panicked before when I encountered one of their experimental “puffer” machines in Fort Lauderdale and there were no instructions. I waited until I was doing it all wrong and then freaked out. (It blew puffs of air at you and checked for traces of explosives, except I had no idea what was going on.) Next time I’ll just look for a human before I step into a machine! You have every right to ask for instructions. You also have the right to ask for assistance or extra time.
Going Through Security
1. Usually you’ll stand in line until you reach a TSA employee who will inspect your drivers license (or comparable photo ID) and boarding pass. He or she will hand these back to you.
2. You’ll place your carry-on bag through the x-ray, and any jackets/shoes/purses/clear bag with liquids go in a bin. Laptops go in a separate bin. If you’re squeamish about walking barefoot in a public place, wear socks!
3. Walk through the metal detector. As your belongings come out of the x-ray, you’ll need to collect them. There should be an area a few feet away where you can repack anything and put your shoes on. It’s not a good idea to stand at the x-ray and repack, as this causes everyone behind you to pile up.
(Interesting post from Cat in a Dog’s World here on alternatives TSA is beginning to implement and how they affect people with special needs.)
You may be told to step aside so they can screen your belongings by hand. It is your right to have someone of the same gender screening your baggage in a discreet area off to the side. It’s possible for your careful organization to come undone as they go through your things, so brace yourself. If you feel they’ve been disrespectful at any point, calmly ask to talk to a screener supervisor or email TSA-ContactCenter@dhs.gov. If you feel you’ve been discriminated against, visit their Discrimination page for contact info.
How to get through the line faster (TSA)
Travelers with Disabilities and Medical Conditions (TSA)
(photo: Crashworks)
Hugs and Kisses: When Social and Physical Boundaries Collide
Do you ever have that Very Awkward Moment when you greet someone hello or goodbye and you’re pretty sure you only gestured for a hug but they move in for an air or cheek kiss? Or you reach out your hand and they hug you anyway?
It’s an awkward situation for anyone, but for someone on the autism spectrum it’s a huge, unexpected violation of personal space that can trigger meltdowns.
What’s confusing is that expectations of whether you’re supposed to shake hands, hug, or air/cheek kiss someone vary according to the situation and culture. Plus, each person has their own individual guidelines that they go by.
1. Casual acquaintances (such as neighbors, people I’ve just met) and business contacts I’ll shake hands with. I’ll signal this by extending my hand in the handshake position. Interestingly, it’s men, not women, who ignore my request for a handshake and say “give me a hug”
2. Actual friends I don’t mind hugging.
3. Air kisses/cheek kisses I’m completely against. One, because it’s always done totally against my will, and two, because no one should be invading my space with their mouth like that.
But I’ve learned to prepare myself in certain situations. Like at some weddings, there will just be groups of tipsy people I don’t know who’ll want to air kiss and hug, so I’ll make sure to stand far far away from them when saying hello. Also, I’ve learned to keep my beverage in my left hand to keep my right free for shaking hands. (Loud music and large crowds have historically not been my shining moment, so I am on guard at weddings!)
Whatever the situation, it’s important to know your boundaries and know how to signal your intentions. If the other person isn’t respecting your wishes, you have every right to be firm and clear. You never have to accept more physical contact than you’re comfortable with!
It doesn’t have to be a huge scene; you can just say “I’m more comfortable shaking hands” or “Why don’t we just shake hands instead.” Or if you’d rather not make any contact, sometimes you can get away with saying “it was very nice meeting you” and leaving it at that.
(photo: petergerdes)
Autism Society National Conference 2010
I just got back a couple days ago from a short but intense trip to the Autism Society National Conference in Dallas, Texas. Sorry for the blurry photo, but that’s me up there with Jason Ross and Alex Plank along with Michelle Garcia-Winner, who moderated the panel. At some point I also had to speak behind the podium which I was less thrilled/more mortified about, but I must have survived. Actually I feel a whole lot better about public speaking now that I realize that the key is not to try to be someone I’m not…doesn’t that sound familiar? (You can watch here on YouTube. Again, mortified.)
The Talks
Next year, I’ll definitely allow more time for sessions. I arrived the day before my panel and was so exhausted that even though I wanted to listen to Girl World or Relationships on the Spectrum, all I could do was plant myself in the first soft chair I could find.
One talk I made sure not to miss, however, was the Speaking for Ourselves panel. Every year, individuals on the autism spectrum living in the area local to where the conference is held get a chance to tell their story at this panel, and it just so happened that my friend Melody from ASParenting was speaking. Melody spoke eloquently, and hearing her story actually gave me chills as I realized how we both started out looking for such related supports and found each other.
How’d The Travel Work Out?
Besides having a fair amount of anxiety about speaking, I was also aware that it would be my first time traveling alone other than the times I flew home from college. Judging from some of my travel experiences in the past (like being in a small hotel in Colombia and realizing there are no other guests or staff while a potential break-in is happening in the middle of the night, and that’s when I discover my room phone doesn’t work, and oh! I don’t speak Spanish) I was unsure about how it could go. Maybe it would be more accurate to say that my husband had some doubts.
I have to hand it to the ASA and the Hyatt Regency Dallas; they made the whole experience go very smoothly. The hotel staff was extremely patient and professional when I asked them to repeat just about everything and never acted like it was anything out of the ordinary.
Halfway through my flight I realized that I’d left my toothbrush and phone charger at home, and started stressing about both of these things. When I asked the front desk where I could get a toothbrush, they just handed me one, no questions asked. My room turned out to have an ipod dock that worked well for charging my phone, so in the end everything worked out perfectly.
If I recall correctly, they mentioned that they trained the hotel staff on being autism-friendly, and I’m curious what that entailed.
If You’re Considering It
I know, conferences aren’t always the easiest to get to with all of the circumstances we have going on. Last year I couldn’t justify it at all. This year I probably wouldn’t have been able to go if it weren’t for the fact that I was speaking. Next year I’m hoping to go and will have to plan ahead carefully for it, but it’ll be worth it.
One question I initially had was whether there was enough programming for people on the spectrum to justify the effort. There turned out to be usually at least one (if not more) talk per session that would be of interest to adults on the spectrum, and it was probably more of an issue choosing just one. That said, you’re not going to go to every session anyway. Plus, there were a good number of adults on the spectrum to socialize with – if you’re so inclined. You could just as easily find a quiet place to be alone with your laptop.
If you go and run into me, please say hi. You might find me wearing a “no hugs please” button.
Guest Post: The Biggest Transition – Fatherhood on the Spectrum
One of the ongoing questions I’ve explored since starting this site has been how people on the autism spectrum handle parenting. Robert from Simply Robert became a father recently and shared this beautiful post with us. He and I used to have these conversations about how we valued our personal space and were content with our child-free lifestyles, so it means a lot to me to see him adapt to his new role in life.
Eight years into our marriage, the wife and I made an astonishing discovery: we were pregnant. Immediately, we began preparing for the addition to our family. We cleared out the home office to make a nursery. We began re-appropriating space around our home to accommodate the accoutrements of parenthood. Then we did it all over again as the wife periodically changed her mind about what should go where.
One thing for which I could not prepare, however, was the challenge involved in transitioning from being a husband on the spectrum to being an aspie father.
A Little Background
For the first several years of our marriage, children were not an option – biological children, at any rate. Before we had been married a year, I was diagnosed with testicular cancer. The wife was fantastically supportive, and I think the experience served to strengthen our relationship a great deal. Unfortunately, the treatments seemingly left me unable to have children. This was not unexpected, but it was a disappointment nontheless. Still, adoption remained an option.
We discovered the pregnancy on August 2, 2009 – over seven years after my surgery and subsequent radiation treatments concluded. Things progressed smoothly at first, but February saw my wife admitted to the hospital for twenty-four hour monitoring. Among other related complications, she had a condition called vasa previa that was potentially fatal to our unborn daughter. She ended up staying in the hospital for sixty-five days before coming home with our newborn daughter in April.
Having to Adjust
Less than a week after they came home, my wife asked me a very painful question: “Do you resent our daughter?” It was a fair, but piercing, question. Of course I didn’t. How could I resent a blessing for which we had waited so long? On the other hand, I had to try and place myself in her proverbial shoes to see where this question had come from.
Having Aspergers, I have always valued my personal time and personal space. My preferred activities have usually involved escapism – reading, Internet browsing, blogging/writing, video games, etc. The nursery had abolished my usual personal space: the computer room. In fact, the PowerMac had ended up in the same room as one of our loudest birds. I’ve hardly touched that computer since it was moved up there last year. Most of my books went to the same room, and I have a difficult time even entering that room because that specific bird (a rescue) can put me into a meltdown in less than a minute.
This was compounded by the fact that our daughter was currently sleeping in the living room where the game systems are. My peaceful stims were being cut off one at a time, and my general composure was suffering as a result. I should also mention that I’m just a trifle OCD about keeping things neat and orderly around the house, and a new baby makes keeping a house tidy a very challenging task. Now anyone who works with people on the spectrum know that trying to remove a stim can result in very selfish behaviors, so it made sense that my wife interpreted my accumulating frustrations as resentment.
Where Do We Go From Here?
The wife’s question was a serious reality check. As an adult, she is capable of adjusting herself around my quirks with relative ease. The fact that she has a background in psychology doesn’t hurt either. Our daughter, in contrast, is incapable of such accommodations. She doesn’t see me as an aspie. To her, I’m merely daddy, and I have a responsibility to her that trumps any self interest. She needs me to be there for her, however my personal issues are faring that day.
Still, how to cope with the internal pressures of Aspergers while being a good daddy was a challenge. Here are some small things we did to help.
- Our daughter loves sleeping on my chest when it’s nap time. Often, I read to her prior to her naps from her book basket. (Her ability to concentrate on the pictures in her books is truly fascinating.) Then, when she goes down, I’ll fire up some games to occupy myself while she dozes.
- I now do my writing on my MacBook either at the dining room table or in bed at night. Do I write as much? Of course not, but that just forces me to be more focused in my writing and to choose topics more carefully, so, in a way, this accommodation is encouraging me to try being a better writer.
- I practice things like voice inflection and facial expressions with our daughter. It’s well documented that infants do not respond well to flat affect interactions. Also, I find it much easier to maintain eye contact with her than with adults. Again, these are adjustment that help me out as well as benefit her development.
- As far as my OCD issues go, the wife has pretty much given me reign over keeping the kitchen clean while she deals with other areas. This seems to be working out pretty well.
Every Day Brings New Joys
Becoming a parent should be something an individual on the spectrum considers carefully before pursuing. It’s a large enough adjustment for a neurotypical individual. That adjustment, compounded with the typically change-resistant mind of an aspie, can be overwhelming at times. Becoming a parent is a permanent commitment, and the changes it brings are non-negotiable.
Yes, it’s been a huge adjustment, but I wouldn’t trade the joys of parenthood for all the JRPGs in the world. For us, the sacrifices have been dwarfed by the benefits. Every day brings new joys, and I can’t look into the eyes of our new daughter without being thankful for her presence in our lives.