What an Aspie Girl is Thinking When You're Talking

I bring the pad of my thumb to my index fingernail and begin to trace the shape of my nail. I’m bothered that it is not even and needs to be filed. This causes me to fixate on it even more as I move from my index finger, to my middle finger, then to my ring finger, and back to my index finger again almost without thinking. All of them need to be filed. I am wishing that I had packed a nail file, but suddenly wonder if it is rude or weird to file your nails when you’re hanging out with your friends.

Maybe not.

I call this “tracing”. Its how I stim. I trace lots of things, not just my nails. I trace the lines of the steering wheel in my car and the edges of my cell phone. I like that they are consistent and smooth. I do this when I am nervous or thinking deeply about something. I am good at hiding what I am doing. I only appear to be “fidgeting”. Its a small, subtle movement that nobody ever really notices, but it helps me stay in my seat.

I’m sitting at the table in your dining room right across from you listening to you talk. This is not my home. I already feel out of place, but I do like to socialize. I keep my tension tucked in the back of my mind and try to ignore it. I want to appear relaxed, welcoming, and relatable.

The light that hangs over your dining room table is a dark yellow and casts dark shadows on your furniture. I find the lighting soothing. Your home is normally very warm when I visit, but its winter and I can appreciate that this time. You’ve been talking to me for about five minutes about how your brother is doing. He lives in Maine and he’s just had another baby with his wife. You’re happy to be an aunt again.

I am thinking about smiling at all the right times so that you know I am happy for you. I’m remembering a time I heard a woman say “CONGRATULATIONS!” and I’m making sure that I do something similar.

When you tell me the news, I immediately put forth my best surprised, yet happy face. It is always accepted. I am working so hard to show excitement that I almost make myself emotional. I want to empathize with you so much that I am trying to put myself in your shoes. How must you feel? How might you want me to react to your news?

I have learned that women love to smile a lot and talk in excited, high pitched tones. I normally do not do this at home. I am more like Eeyore at times or that cartoon girl Daria, just not so negative and a little more expressive.

My show of excitement seems to have rubbed you the right way and that makes me feel good to know that I did the right thing. Our little chat requires more thought for me than I assume it does for you. I am aware that I have to think through all of these things, but I have been doing it for so long that it flows almost perfectly by now.

You ask me how my brothers are doing and I get that “deer caught in the headlights” feeling for a moment. My mind blanks and I have to work hard to think of what to say. How are my brothers doing? One has enlisted in the Air Force. That’s interesting information. I’ll share that!

And so I do and you ask me where he is stationed. This is an easy question.

“That’s great! And how are your children?” you ask me next.

My mind floods with images of my children and what we have been up to lately. So many things come to mind that I almost cannot think what to say. I look to the side momentarily and make sure to use my “thinking” face so that you don’t think I’ve gotten side tracked. I know that it’s odd to take so long to respond to these things so out of pressure, I start rattling off everything I can think of about my kids recently. Before I know it, ten minutes have passed and I’m embarrassed because I realize I have rambled.

Chatty, excited type people tend to be unphased by my rambling. They just build off of whatever I’ve said. Quiet people seem to be the most bothered by the way I talk because they feel as though I never let them speak. I talk the most when I am nervous.

But you are chatty and excited and you take my rambling in stride. You even make a joke that we both laugh about. My best social skill is my wit. I’m able to turn many of my awkward social moments into something funny and people love that.

Despite being a little overwhelmed when it is my turn to talk, I do love chatting with people like you. You take initiative in conversation and I have to think less about what to say. All I have to do is follow your lead and try to be funny. You’re funny too and that gives me the chance to shine and do what I am good at.

“That’s great! How are they doing in school?” you ask.

I start rambling again about details you don’t even need to know, but it fills the time and we go back and forth like this for a little longer until I notice that you are smiling less and have become quiet.

There is an awkward pause.

I glance at the time and wonder if you may be getting bored and ready to end the conversation. How long is it appropriate to chat for? I wonder. Should I begin to wrap things up?

“Well I guess its time for me to go. I’ve got to get my children,” I say, even though I technically have another hour before its time.

“Oh so soon?” you say as if you are surprised. Maybe I misunderstood your desire to end the conversation?

“Yeah the babysitter has somewhere to be,” I smile to show ease.

“Well,” you say, “it was so nice to see you!” We stand up and give a big hug goodbye and just like that, its over.

I am so happy to have been able to interact with someone in a way that is affirming and accepting. One single positive interaction can encourage me for the rest of the day. Despite common misconceptions about autism, I want friends. I need human interaction and healthy connections just like everyone else.

You don’t know yet the impact you’ve had on my social skills. Maybe one day I’ll tell you.

The #1 Thing Autistics Want You to Know

I took a poll recently from different autism support groups asking members what were some of the most important things to them for people to know. I received good topics, but there was one driving thought I believe was behind the majority of the insights I received and I want to share those with you. If you’re the parent of child with autism, a spouse, a friend, caregiver, or just a good person who wants to help in any way you can, this is for YOU.

I believe I am in a unique position to speak on this subject due to the fact that I did not receive my autism diagnosis until I was 31 years old and by that time I had been raising two kid with autism for thirteen years. This means I have experience living as a “neurotypical” and years of experience as a “neurotypical parent” with autistic children. I know the grief that we experience off and on and the desire to get into my son’s world, to know what they know and see what they see.

I’ve also spent the past six months knowing that I am actually autistic and learning to embrace the way I experience the world. I know what it feels like to want to speak up for myself, have a voice, and be understood, hence this blog.

I remember the day my first child was diagnosed about twelve years ago. I remember being afraid that something had been taken from him, from us. What I wouldn’t have given to fix that for him! I worried because somewhere in the back of my mind, I wasn’t even aware of it, but I was afraid that maybe something was broken in him. This was the source of the grief that visited me off and on for years.

When history repeated itself with my second child, my world flipped upside down. I saw autism displayed in two people in such vastly different ways that my original idea that autism “broke something” or took something away was forced to come into question.

As they grew and progressed in therapy I started to notice their unique skills, talents, and ways of viewing the world that caught my eye. Through therapy I watched both of them go from being unable to speak, walk, write, and read to fully verbal, able to write essays for school, and not only walking but running. (They now have a trampoline in our backyard they both thoroughly enjoy!) The idea that something was “wrong with them” started to change. I found myself feeling proud of their abilities and took every opportunity I could to brag about them.

My diagnosis years later was the final push I needed to be able to see autism for what it truly was to the autistic individual.

I realized that autism is just a different kind of normal that most of us are okay with. It’s the only existence we have ever known. I did not wake up one day suddenly missing something I previously had. There is nothing for me to miss. I’m happy as I am, although I do need supports and some days I am hard on myself, for the most part I am content. I find this same thought echoed throughout the autism community.

I also learned something else VERY important.

How I see my son’s autism is how they will eventually go on to see their own diagnosis unless I show them otherwise. It’s also how others will see their diagnosis. I don’t want them to see themselves as broken or lacking. I don’t want the world to see them as missing something important because they aren’t missing out on anything.

I want them to learn to develop their own voice and gain the skills to support their own selves when no one else is willing to listen. So what if they spend more time staring at lights on the wall or lining up their cars when other kids are outside on their bikes? They are HAPPY. They want friends, but they need the ones that are okay with looking at lights too for a little bit. They need ones who will say that the way they line up their cars is kind of cool.

My sons need to know how to be happy with themselves, but also how to function in society. That’s where therapy comes in. They CAN learn these things in their own ways. With the aid of modern technology, all they really need are the right kinds of people around them, and they’ll be okay.

So what’s the number one thing we want you to know?

We are happy.

Don’t worry, fret, or fear any longer than you have to. Go ahead and grieve. I understand that, I really do, but don’t grieve forever because we don’t want you to.

We love you and we want you to feel good enough to join us in our endeavors and to teach us the things we need to know. We don’t feel like we got a bad deal in life. The best way you can support us is to change the way you see our diagnosis. Some autistics are even proud of their diagnosis. Teach us to be proud of what makes us different and show us that its okay to ask for help. Brag about our interests and how many different kinds of elevators we have toured and memorized. We will follow your lead and so will the world.

Just Sam

I got diagnosed with autism at the age of 31, about six months ago to be exact. There is an entire undiagnosed life coming to light for me over these past months. Some days it comes in waves and I’m pouring it out to you in this blog every chance I get. Other days I’m quietly thinking it through and not always sure what it all means.

I’m looking back on 31 years of struggles and sadness and learning to recognize them for what they were and let them go. I’m starting to forgive myself and embrace who I really am even if it’s not what everyone else says is cool.

In some ways I feel like the adult me is having a good chat with the little girl me and some healing is taking place.

I’ve been sharing some of the more difficult moments with you as they come to me, but today I just want to stop and breathe.

For the first time in a very long time I can say that I am in a good place.

And I want to enjoy that.

I’m learning to advocate for myself now and to not be embarrassed about it. I am getting better at helping myself when I can and when I can’t, to ask for help. I’ve never been good at that. I’ve always pushed myself to be like everyone else because I thought I was just like everyone else.

Turns out I’ve been competing in marathons when I was created for a walk that lets me take in what everyone else is missing.

So I’m in a better place now. Better than where I was, but I’ve still got work to do. I just won’t be destroying myself in the process this time.

I have two boys on the spectrum that need me to teach them to have a voice. And there are hundreds of little girls out there who need a voice like mine and I want to do my part.

So here I am. Just me. Just Sam. I am making peace with my past now so that I can accept myself in the present and advocate for my future. Please join me on this journey.

There is so much more to come. I know it’s not done yet.

Wounds that Speak

I could tell you that the way my skin pulses when I am unexpectedly touched is the worst part about being autistic. I could tell you that anxiety has ruined my life or that meltdowns that turn into shutdowns are most devastating. I could even tell you that suddenly going non verbal when you have so much to say is the most painful thing of all, but I would be lying to you.

There are wounds that speak out against the lies that autistics feel nothing, have no empathy, and rather be alone. There is a heart ache that stands as proof that we bleed like everyone else. There is an aching lack that affirms the essential need to be in good company.

Perhaps the hardest part of being autistic has nothing to do with autism itself rather being continuously rejected for it.

Perhaps the hardest part of being autistic is to be who you are and yet who you are is unacceptable.

Perhaps it is to love with all your heart, to care for others the way you want to be cared for, and to receive no care and no love in return.

Perhaps it is to accept those who will go on to reject you. Perhaps it is to be honest with those who will lie to you. Perhaps it is to love first those who will not love you.

Perhaps it is the wounds that speak the loudest, that prove that while I am autistic, I am mostly human.

What’s up with autistics and precision?

Precision. Accuracy. Order. Analysis. Details. Exactness. Lining up items. Writing lists. Keeping things tidy. Truth telling. Following the rules. Disdain and loathing of things that aren’t honest or “just right”.

These are all things that people on the autism spectrum appreciate.

My son has an amazing ear. He is so attuned to pitch that he can hear the space between where an A note on a piano becomes an A#. He will say, “That A is not quite an A. It’s a little high.” Detail and accuracy.

My other son who is also on the spectrum has a great eye. He will remember out of a box of fifty hot wheels cars all mixed up, the seven that came from his grandmother’s house. He will line them up just so, all fifty of them, and not forget their order.

My mind needs everything to be accurate and true. It will bug me forever and a day if something is translated wrong or if I answered a question untruthfully. My mind can analyze several outcomes and possibilities when asked a question and juggle all of them around long enough to spit out very carefully worded answers. I will sometimes go off on tangents explaining the details of the details.

I also need my surroundings to be lined up, clean, and organized. I have been referred to as a minimalist though I don’t fully agree with this, but I do take it as compliment. I would rather throw things out if I can’t find just the right place for it. My shirts are hung up by color with summer items on the right and winter on the left. My shoes are organized by heels, wedges, boots, and sneakers. Every drawer in my dresser has a specific purpose and one item can not be misplaced. My cupboards are organized just the same. Glasses cannot be mixed with plastic cups that have logos and designs on them. Sippy cups must also be lined up next to one another. I thoroughly enjoy organizing things and it deeply effects my moods for things to be out of place. It feels like a gnat flying in my face when I am trying to do other things. My mind will constantly go back to the things that are not “right”.

It is so involved that I will get in a foul mood if my hair is out of place though this has nothing to do with vanity. Hair spray is very important to me. If I feel a strand of hair flying near my face during the day I will be distracted by it until I can go home and brush it all out or tuck it away.

If trash cans or sinks are full it too will bug me because it’s “not right”. My mind has a constantly running to do list of things that I cannot get away from. Things that most people choose to overlook when they’re busy or need a break. I cannot do that, even if I’m sick.

I also hate lying. I don’t understand passive aggression because it’s not telling the truth. I don’t like that we can’t just say the truth all the time, but I understand that some truths are not socially acceptable and for that reason I have learned to filter. Sometimes when asked for an opinion I have to work very hard not to supply an overabundance of details because my mind works in order and detail. I am the queen of “fine print” and “disclaimers”. I feel that I have done you a disservice if I do not make you aware of all the smaller details in response to your question. If asked question I do not know the answer to I can even become depressed because there is a loose end that has not been tied. It will bother me for the rest of the day.

There is something about things being “just right” that fills an autistic person’s mind and body with peace. Perhaps this is because we experience a LOT of anxiety due to our other issues. Being able to put the objects of our choice in a certain way each time is therapeutic and delightful.

And we become rigid about changing our preferred things. My son will not tolerate a slightly high A note being called a true A. It must be called a “high A” or he will make sure you know it’s wrong.

My other son will not rest until he finds all the cars in the series he has become fixated with lining up lately.

We can have meltdowns (or depression for some autistics) if our stuff is not “just right”. Our whole sense of rightness with the world can be put off by one single thing.

I would say that we are incredibly sensitive people. We absorb the energies around us and respond to things other people don’t notice. My energy feels immediately cluttered by a messy environment and it effects my moods.

Though there is a purity to this in that we really don’t like to tell lies and can be very transparent. If we tell you something you can rest assured it’s very likely to be true according to what we currently know.

We love order, accuracy, and precision. It’s just our thing and it makes us happy. The girl who organizes well can making her living at the library putting away books or in stock at a retail store. The boy with perfect pitch can make a living as a sound tech. Let us have at it. Let us do what we are good at. The world will be cleaner for it, more honest, and in better order. Everyone wins.

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