My survival kit

People have wondered, what are your tools for getting through the day? I carry things with me always, with more at home, so that I can cope. What I use varies on my situation, what I need varies on my situation, but I always make sure to have things available, because need frequently occurs.

I carry my backpack with me almost always. This is because its filled with tools that I need to assume I'll need except in unusual situations, and can be really awkward to swap stuff around for carrying things in alternate ways. When I need to assume I need everything, carrying a backpack is basically a necessity. When I'm not carrying my backpack its because I've pulled some of these things out, and also have a human there to assist me who knows how to if it is necessary to. I don't want to rely on my boyfriend if it is not necessary to though, so unless it is a minimal risk situation and he is there, I'm bringing my backpack.

Backpack's default set of items:

• Medication: prescription meds and supplements organized in a 4x a day weekly pill box, OTC things in my keychain, migraine abortatives, medication is necessary to always have available with me, and organized where it is needed rather than just thrown into my backpack and expected for me to figure it out when its necessary

• Earplugs: Noises are too loud and overwhelming. Earplugs are itchy and problematic, but laying hearing protection is sometimes necessary to survive without feeling like I'll explode. Also, I carry them on my keychain, so if I need to just pull my keys and wallet, I'll still have something to help reduce sensory input.
• Earmuffs/Ear defenders/whatever you want to call them: Primary hearing protection, I use earmuffs despite them being more visible, because they don't itch inside my ears. Sounds are too loud, too painful, mess with my balance...No matter how much hearing protection I use they're still easily understandable, but sometimes its no so overwhelming when I'm using it, and worth the discomfort of wearing things that do something like squeeze my head.
• (Folding) Long cane (also referred to as a white cane, though mine isn't white): Being able to always process vision isn't something I can do. How well I can understand what I see varies drastically, and how much it costs to go through that process of decoding what it means varies drastically. When it is more costly, or when no matter what I do I either am running on a few seconds delay for vision, extreme tunnel vision, or simply seeing but not understanding, I implement (more) strategies used by blind people. It allows me to use my mental power for things other than attempting to navigate the world by sight when sight isn't working with me.
• Folding balance cane: My migraines come with bad vertigo at times. I vary from being able not being able to walk with my cane, to running up mountains which require awkward navigation. I plan for both. Sensory overload, migraines, vertigo setting in, my body might feel itself or the world moving, my leg might spasm and tense up, not wanting to work without being in pain. Whatever it is, I'll not be limited, so I'll move with things that I carry instead.

• Tangle Jr: Such a useful stim toy! I carry the one which is covered by a squishy rubbery material, I don't remember what its called. So many reasons to want to pull out a toy and such a useful one to have
• Rite in the Rain notebooks: Because my hands hurt when touching normal paper. They feel like the sound of nails on a chalkboard. I can't handle it, and it makes me want to bite myself, though I rarely follow through with the urge. Having paper that is coated for waterproofing changes the texture enough that it doesn't hurt anymore! And they're waterproof paper too which is awesome.
• Compression gloves: My hands are the most reactive to everything texture, and frequently hurt. Showers hurt them badly. Sometimes simply the air hurts them. Compression gloves help, though don't get rid of it completely, so I wear them when it gets bad. They make it harder to do things, and make me prone to losing my medical alert bracelet, so I try to limit it to necessity, but when necessary, its the difference between being able to concentrate at all, and all my focus being on "my hands hurt".
• Altoids: PEPPERMINT
• the heaviest drafting pencil the stationary store had: Heavier pencil makes my handwriting so much neater, and makes it so much more comfortable to write.
• Kindle: Always have something to turn to! I always can go to any of my books. I don't need to read paper books. I can always turn to my books no matter where I am or what I'm doing!

Other tools:

• Smartphone/tablet (7"): I use both my phone and tablet (both android) heavily. I have communication apps, stimming apps, executive functioning apps. I use alarms to help me organize my day, complete with different sounds for different things. Having a computer on me always has been a thing I've relied on, but with smartphones I've been capable of swapping to just having my phone, though my laptop is very important to me.
• Tinted lenses: I wear greyish blue tinted lenses in order to help with visual processing. They help with having fewer visual distortions, fewer headaches, better depth perception, and generally, better visual processing.
• Medical alert bracelet: I'm always wearing a medical alert bracelet that tells people about my migraines, autism, and medication allergies. I've needed to use it before to communicate to people on my behalf.
• Compression shirts: Compression shirts are very useful for deep pressure that you wear on your body and carry with you always. Wearing them under whatever you'd wear that day for clothing, just works well. For extra compression, breast binders work well but some people would prefer not to use such a thing.
• Weighted blanket: I spend most my time at home under my weighted blanket, despite some people saying this is a bad idea. Without my weighted blanket I struggle with understanding where I am in space. With it, I can think clearer, and am more aware of how things are supposed to be, rather than the weird feelings of wrongness that exist in my limbs.
• Weighted vest: While the weighted vest doesn't work as well as the weighted blanket, it is a useful tool to add when going in public along with the compression shirts.
• Vibram Five Fingers: We have a theme here on the propioception impairments...Using minimalist shoes means that despite propioception impairments, I don't have issues with things like constantly spraining my ankle anymore! I'm able to use touch - feeling the ground beneath my feet - in order to adapt for the fact that my propioception is impaired.
• Peppermint oil mixture: I carry this in my backpack if I have a choice, but at the moment its in a bottle where the lid might get broken :(. A mixture of 50% peppermint oil/50% everclear, its useful for so many things! Topically its a good muscle relaxant. It's a strong peppermint oil, so it can be added to drinks, for peppermint flavoring, dealing with the fact that I can't drink water straight. The fact that I seek peppermint also has great benefits with such a mixture...
• My swing: I have a swing in my bedroom! It's awesome. It's an egg-swing I describe it as. Whether I'm actively swinging, just sitting in it hanging from it rather than sitting on something stationary, it is calming, and gives me a different sort of sensory input than not being in my swing does.
• My cat: She does so much for me. She's my ESA, my migraine alert cat, just my cat. She could easily be a service cat if I lived somewhere where I could have a public access service cat. I can't read my own emotions, but she can, and I can read hers, reading them off of her. She leads me away from situations when I'm getting overwhelmed. She helps with meltdowns. She alerts to migraines. She is too smart of a cat, and the perfect cat for me, doing so much for me.
• My cloak: In the winter, or fall or spring really, I wear a cloak for a coat. It's like a portable blanket! As well as all the other benefits of wearing a cloak (really, they're just better in so many ways), I get the feeling of wrapped up like I do in a blanket, and can use it like a blanket in public. When I prefer to wrap up in a blanket so strongly, this is so useful.
• Cefaly: This is an incredibly useful and incredibly interesting device. It's frequently referred to on the internet as a space crown or a space tiara. It's a device you wear on your forehead, have do electrotherapy for 20 minutes a day, and it reduces the number of migraines you have. Also, if you wear it during a migraine it can reduce the severity or even get rid of the migraine! It's really awesome, and my favorite part of my migraine treatment.

Other sensory things that I'm not currently using as much

• Brush for Wilbarger's brushing protocol: This protocol has been very useful! I still have brushes for "tune ups", though I don't do so frequently, just because of being out of habit. It's useful to have for when I need and remember, even if being out of habit makes it hard to use every time I'd prefer to. And the protocol was drastically useful when I went through the protocol.
• CDs and Headphones for Therapeutic Listening: Similar to Wilbarger's Brushing Protocol, I went through this program, and use these for tune ups now when I'm most sensorily in need. In these one's case it has more to do with when I have the time to be spending 20 minutes no doing anything mentally stimulating, and not moving (because while you're allowed to move around during the program, my body cannot handle moving at all).
• Theraputty: Great stim toy, even better for strengthening wrists when you've injured yourself stimming. I have the set of 6 different colors and will work my way up to the second to strongest from usually the second to weakest if I've done something like bothered my wrist. Otherwise, I like the second or third to strongest to play with.
• More stim toys: Description unnecessary in my opinion.
• Noise cancelling headphones: Really useful to have some proper noise cancelling headphones, but it requires having good noise to play with them. Wrong noises and I can't focus on what I want to focus on.
• Respro Mask: I have an activated charcoal/HEPA combo filter mask, for dealing with smells, how toxic the air is, etc. It used to be one of my commonly used items and always in my backpack. The issue is that my face is too small for it now :( and in order to get a smaller one I need to buy both a more expensive mask and a filter that isn't the filter it originally comes with so I keep forgetting to order it.

Plus, on top of my tools, I have many coping strategies that are internal. I have taught myself how to use sensory information that isn't the "expected" one for a situation. I will visibly stim. I will use things like walking following lines, with my hand on the wall, or feeling where the grass is and where the sidewalk is. I've taught myself how to turn off processing for senses at will, allowing me to not be overloaded by them, or to be more easily able to process other senses, or other ability (such as speech). I've taught myself how to alternate necessary skills, in order to get through a situation, when I should need all of them, but can't do all of them simultaneously, by turning off everything that isn't completely necessary; keeping myself balancing, walking, seeing, speaking, in turn.

I have lots of skills, lots of tools, and use them. Because I know I am impaired, but I want to do things anyways. If that means doing them in odd ways, where I end up exhausted, dependent, and in pain, I'll do them anyways, because I'm going to choose at times its worth it and know how to do it when it is worth it.

Accommodations

"We can't do anything for you" means "We don't care"
Or "you look normal"
Or "Any effort at all we will say is too much"

How many times have I heard this?
Refusal to help
Ignoring what I need

Invisible.
But that doesn't mean that I don't need my accommodations
It just means they get away with it easier

As once again my path in life changes because of the same refusal
To let someone possibly be capable of doing what they are capable of
I wonder if it is worth asking
Because every time I'm told the same things

"We can't do anything for you"
Whether it is sitting me in a room by myself
Or putting up signs saying not to spray perfumes

Actually doing your jobs is too hard
So instead you make my life harder
Push me away
And make it so that even when I'd help you, I can't

It's not even better for you this way
It's just so much harder for me.

A Wizard Alone

I remember 2002.

There was this book I'd pre-ordered. I'd gotten the first four in 4th grade, realized it wouldn't end there excitedly when I saw the fifth in the library when it came out. It became a series I'd have to pre-order books for. This one had just came out. It was named A Wizard Alone.

There was fantasy, and all of what I looked for. It was one of my favorite books. What was different about this book though, was that one of the characters was autistic. He was presented as entirely in his own head, and it wasn't made clear (to me at least) how much that was autism and how much that was plot. In the end, he was magically cured, having chosen to give up his autism, when he was able to in a magical way.

This was also the year I was told that I was autistic. It wasn't in those words, and I didn't understand. I was a 13 year old, without much support when it came to this in particular (because of lack of knowledge), no matter how much people supported me in everything else.

I was told I probably had Asperger's. I didn't really understand what that meant, though I was given some information. I responded by hiding back into my books in confusion, though I'm not sure anyone realized. Of course, one of the books I returned to was A Wizard Alone, with its autistic character. With its character who was magically cured.

And I actually started figuring out myself with that, though not in the best way. I reacted with confusion from one of my favorite books being like this and my disorder being autistic spectrum and then "that's not me". I don't want to be cured, I shouldn't be cured. I reacted in the way I see so many people doing now, separating themselves from the people they call "LFA". I went strongly mentally into neurodiversity, but I didn't understand it. I wasn't understanding how someone could be impaired and want to be themselves. I couldn't understand my own impairments.

I had this internal struggle going on in many ways. I knew I was happy with who I was, and apparently had these labels, but I shared these labels with someone who it was clearly a wrong part of them in my favorite book. How could this make sense? It wasn't making sense, and I pushed it all away. I made it so that this could be a favorite without it saying any less about someone who was like me, I made myself different.

Yet at the same time, I related, and I kept returning. I reread this book more than the rest of the Young Wizards books in these years. When I was trying to understand myself autisticly, it was one of the places I turned, because it was a book that meant so much to me, and who's characters were important to me, and which autism was a part of. The fact that it ended up with the autism going away didn't mean that the autism wasn't there. I eventually started trying to find ways to justify it like it not really being autism, because I related to feelings even though the traits were so much more pronounced than mine, and didn't want that part, but didn't want to think any less of the book.

I figured things out eventually of course - I didn't keep othering people, splitting it so strongly into Us vs Them. But, it was after this strong reaction from this book of "I can't be that, I can't be someone who gets treated that way, they are, not me". And I didn't at first realize that they shouldn't either, or that it wasn't me vs them.

My early process was very defined by that book. It wasn't one that was negative about myself, but it wasn't one that was positive about disability, or other people, and it was one that was me not being able to recognize that I could be impaired. I don't now know how I viewed myself, as both having this disorder and having no impairments, but I did so.

This would all suggest though, that there are a lot of problems with this book. (No matter how much it was one where I read it I don't know how many times in my early teenage years. It really was one of my most read books.) And there are, the treatment of autism was really negative. But, what was awesome, was that the author recognized this, and worked on fixing it, and that itself is worthy of mentioning.

There was a new edition put out in 2012ish, where Diane Duane was fixing timeline consistencies and updating it for newer audiences. I bought but was terrified of reading A Wizard Alone, because of the treatment of autism. It could be done well, it might be done terribly. What came out of this update included references to the intense world theory, suggestions that autistic people are actually people, and a character who in the end had the choice whether or not to be cured and chose not to. There was actually an autistic character now, not someone who was there only to speak of the horrors of autism.

It was in many ways, saying that book that started my journey had been revised into one that didn't say I shouldn't exist. It could agree with autistic people. It wouldn't limit me into being someone either with impairments or with abilities. That was something needed and which is so hard to find in fiction.

When I started, I was someone young and trying to find my way, not aware, but not wanting to be treated badly. Now I'm being shown that I don't have to be. Progress is happening.

Struggling to Explain

I wonder if they realize that I might ever show symptoms. They know my diagnosis. I don't hide who I am. They've seen people there to help me out. But I'm an adult.

Expectations are broken. I don't know what to do. My brain feels jammed up. But instead of being supportive, or even saying that yes, they made a mistake, the same question is repeated. The question which doesn't get a reply the first, or second, or third, or fourth time, keeps getting repeated. The question that just keeps saying "you should just take what we're offering, even though it won't actually help, and will actually make things worse".

Jammed, unaware what to do. All my routine broken. Needing to get stuff done, because people keep saying things to me, that say I need to have an answer in the next 10 minutes, 5 minutes. I stare at my phone, still not having an idea, still feeling like everything is wrong with the world, still feeling a need to hide, but not even having a place to hide.

Explaining is too hard. I can't figure out how. Even now, I can't share the lost and confused feeling of not being able to organize your thoughts or feelings. I don't know how to make even people here have the least bit of understanding of the having a problem that you can't solve, and not being able to figure it out, and it being like that is piling on top of itself, as people don't understand that it is even a problem. And at the same time feeling lost inside your own brain, trying to find ways to find solutions, but not finding ways to even think clearly enough to approach them. Even simple solutions would be out of reach, because of all-consuming need of finding-self. Yet the finding-self doesn't seem doable without solving the problem.

I don't know how to make people understand the confusion and wanting to understand, and wanting to find solutions, and instead just being lost inside. And feeling like it is expected that there is nothing at all.

If I can't explain it now, how could I explain it then, when I can't find myself? How can I explain that I'm trying to find solutions, but am just being asked over and over why can't I just take their solution. Questions I can't reply to.

Is it surprising that I reply to things I don't expect? Is it surprising I don't process repeated questions, or take time to reply? Maybe people can't understand. Maybe they still need to figure it out. But how can I help them figure it out when they already know of my diagnosis, I'm open, and there's only so much I can do when it is happening. People need to pay attention to learn, and I can't make them do that. I can only try to help them if they are willing.

Disappearing processing

Usually I just write posts when I have something to write about. I sit down here in order to write out a post, and while what comes out might not have been what I planned, its organized. Alternatively, I write a post in my head as something I want to say, because of what has been going on around me, and share it when I get to a computer.

This is completely different, and feels more personal in some ways. It's worth sharing, so I'm sharing it, but its not what I normally write. This is when I was asked to do something to help out and I couldn't, and went to say something online, what came out. This is what I was saying, while I was losing my ability to process senses. This is a description of senses being more jumbled up in real time.

I plan on these happening. I organize my day and my week so that my body losing the ability to understand the world has minimal effect on others. I have taught myself things from mentally being able to swap visual processing off and just use processing the other senses to understand what's going on (and without vision it is easier to process other senses, especially hearing), to how to get backup information from alternative senses, to what I should carry with me to keep myself safe. I reduce sensory input to reduce frequency, and give myself what I seek more than I seek it.

But still, when it happens it can be disorienting and make me feel like I'm not able to do what I need to do. No matter the frequency, it makes me feel like I should be doing more.

So here. This is one sort of what its like to be losing processing. Typos are because I could no longer process vision even enough to have any tunnel vision; it was just gone. I'm not sure how understandable it is. I feel like its missing so much. But, even little bits help with understanding.

I can't adult.

At school all day today my vision was blurry from not processing vision and I tried to work through that.

My speech was reduced.

Being able to remember where things like the work I was giving them was barely there. If we finished early, extra stuff, I didn't have any clue what to do and couldn't make it up despite usually being great at that.

By the end of the day I was sitting there losing time in dissociation.

I had stuff I was supposed to do here. I got a load of laundry in. I stopped functioning. I've not managed to swap it over. I've not managed to get myself anything to drink. I've been home 6 hours and thirsty the whole time.

My body isn't understanding what's going on around it at all. I'm hearing sounds and they don't mean anything. I'm seeing things, and the things I'm focusing on writing, I can see a fraction of my particular post here, and everything else is gibberish, if it exists at all.

I feel cold on my back and I don't know why. I feel things on my hands that I can't understand. They might be touching things I don't know what. I think my head is spinning. I can't figure it out if it is or not. I can't understand anymore. My vision is getting more lost. I can see colors now. I am typing from muscle memory.

I'm supposed to be doing things. They need my help. If I don't then food will be delayed even more. I don't know how to adult. I don't how how to keep my body froom floating off in pieces. My arms are glued down and heavy and my legs are unattached and my back is only partially feeling things and I don't know what is happening to me.

I need input that I can understand but I can't understand enough to get it. I need things that are clear. I need sound that is defined. I need strong foods. I need heavy weights. I need to be held tight. I need to touch more things. I nee to move and everything.

And I'm hthe only one home and will be for at least another 30 minutes.

At least I'm in bed with my blanket.

My diagnosis was about them being different, not me

I was diagnosed with both Asperger's Syndrome and Sensory Processing Disorder at age 22. They were a long time coming. The symptoms had been life long, I'd been coping with them on my own, and now I finally had been labeled. It wasn't being signaled out, being told, "you are so different, look, we need to give you a special name." No, truthfully, my diagnoses weren't about me being different than others, they were about others being different than me.

Some people are against diagnoses. They worry about labels for themselves. They worry about labels for others. They think that people will be told how different they are, and really in this society different is commonly viewed as lesser. The truth is, we are different either way, its a question of knowledge. Giving people more information won't make them anything they aren't. It will, help explain.

Some people I talk to, describe growing up knowing how different they are, knowing there's something odd about them, searching, wanting to know. They describe finding autism and this meaning they finally understanding their childhood. This wasn't me. I didn't know how different I was. But in both cases, knowledge can be helpful.

For me, like I said, it wasn't at all, about me being different, it was about others being different than me. By the time I was diagnosed I knew I was different, I even knew I was autistic, but I didn't understand it. Through the diagnostic process I learned a lot of what my impairments were; because they were things I assumed were true about everyone. Over a year later I'd be reading yet another book about sensory processing, and say "wait, that's not true about everyone?" and learn yet another way that I just have adapted, and have been coping. I assumed others were like me, rather than assuming I was different. I forced myself through things, but I didn't do it in a way that was taking care of myself, or that was allowing me to get much done, while others were developing anxieties. In both cases, we needed to stop, and learn how to do things properly.

I'd adapted a lot to the world on my own, by assuming it was what everyone was doing. It wasn't in a way that let me get nearly everything I should be getting done done. It wasn't in a way that lets me manage myself properly. So, when I realized this wasn't what other people did, and that there ways I could do things that allowed me to manage myself more properly; I needed to learn them. My own techniques were and are, a great resource. But now I'm learning about myself in ways that mean I don't need to manage making myself nauseous every time I shower.

The diagnoses told me they were different. It told me what I didn't know. It told me how I could learn. It gave me the opportunity to make things better by finding new solutions. It gave me the opportunity to figure out that not everybody has some of the limitations I assumed. Telling me I'm different, might not tell me where to go, but I had somewhere to go. I had a lot to learn. And I've learned a lot about myself. Comparisons aren't always bad. You just need to know what sorts of comparisons you are making, and to try to learn to make fewer assumptions in the process.

Now I deal with the assumptions being made about me, because of my diagnosis. They assume what I'm like, because of my label. This is why they don't like the diagnoses, I suppose. Because they don't like the assumptions. But I still think these assumptions are better, because now I know, and before I didn't know that I didn't know, and that makes a huge difference.

The harm of us vs them; to @SesameWorkshop

When I was a child, I wasn't taught about autism. It wasn't a topic spoken about. Not hidden, but not in the public view either.

When I was 13 or so, I was told, that I probably had Asperger's. I wasn't told much, but I was told some. I was given enough that I could research online.

What ended up happening, was that I went into neurodiversity. This was a different form of being. There was nothing wrong with me. Some people were like this, and other's weren't and this was fine. But what also ended up happening, was that I said I wasn't disabled, denied my impairments, and pushed away any relation with autism. I wasn't like those people. I couldn't see the association, the relationship, between me and the people who couldn't speak for years, if ever.

Eventually, as I grew up, I was able to learn that I am impaired. I was able to learn what my impairments actually are, and I was able to see, wait, this is how I am autistic. And I was able to understand how I'm autistic, someone with a speech delay is autistic, someone with partial speech is autistic, and someone who is nonverbal is autistic. I was able to understand how the traits vary, and yet are so similar, and relate when I read writing by a wide range of people. At this point, its easier for me to relate to someone who's nonverbal than someone who's where I was a decade ago.

But, while I'm telling this story, you might wonder, why this is relevant to someone like Sesame Street. This separation. This us vs. them, is harmful, to everyone involved. I didn't have guidance to learn this. I needed to learn it on my own. I needed to learn how I relate to others, while the information I was getting was pushing me in the other direction. The people who cannot speak or take care of themselves are different than those who can and they are different than the "normal" neurotypical people. That's the overarching view of autism information being shared.

This us vs. them, ends up leaving people without help. It ended up leaving me without help for years, and I'm struggling to get it now. The years of me thinking I was unimpaired, only "different", I knew, and yet didn't do many things which would have helped because I was separate. I didn't need help like those people in my mind. This left me farther behind when I realized what was actually going on. Now, other's view me in diagnostic stereotypes, because of the us vs them fight going on around me of the same, again, denying me help.

It ends up with people getting abused, mistreated, and fighting a world of stigma. People understandably become unwilling and unable to turn to others, when others are right there. Other's struggle along on their own, never managing half of what they could do if anyone would treat them the same as the others around them. It leaves autism, in a world of its own.

Instead of saying autism, all of autism, is a thing, which occurs, a thing which people do need help for, and a thing which isn't a tragedy of burden, it leaves, us, the autistic people. And yes, we're both autistic and people behind.

There's one group, at the center of all of this. There's one group, which leads the charge of how autism is a burden to all the families, to the world! And how it doesn't matter if we're trampling autistic people in the charge. There's one group which says that if you're able to speak, you're separate. That groups people, and in doing so takes the voices away from members of all groups.

You've probably heard lists of what's wrong with Autism Speaks. The list is long: dehumanizing; spending little money actually on helping families of autistic people (4%); stealing writing from autistic people; the "I am autism" video; not having one autistic member of the board of directors; things like someone in leadership talking about the only thing stopping her from driving off a bridge with her autistic daughter was her neurotypical daughter at home on video; generally denying anything about adults with autism, or our ability to do anything successfully...

These all cause pain directly. They also build a culture of fear, hatred, and fighting. People are afraid of those of us who are autistic. Why wouldn't they be, when they're taught that the only thing we are are burdens who are unable to ever contribute to society and who meltdown at the drop of a pin. And people are becoming more and more aware of autism than when I was a child, and not in positive ways. Now autism is a bad thing. It's a bad word. It's an insult.

All around autism; there's hostility and fear, in ways that we're needing to unite against in order to try to overcome Autism Speaks. We're needing to try to teach that every person deserves to live. We're needing to try to teach that every person deserves to be able to be treated with respect. We're needing to try to teach, that every person. Everyone, deserves a chance.

Teaching about autism is a notable goal. There are many reasons to want to teach children about autism, from classmates growing up, to seeing behaviors that would be pointed out in public. However, teaching about autism should be done in a method that promotes equality. We deserve our voices, whether spoken, typed, or pointed.

Many good things are taught through children's television. This could be one. Autism Speaks, while the biggest name in autism, is one who isn't there for those who are autistic, and is that toxic.

Please Sesame Street, do this another way.

Written for the "#EducateSesame" flashblog

A shower

The water turns on, and you wait for it to heat up while you do your exercises for your ankle. Counting 20 of them. That's how long it takes to get the water to warm, is twenty times onto your toes and back, and doing that helps with your ankle strength. Then you step in.

You were careful to bundle your hair first. That way your hair could stay as dry as possible. But without a good stream of water you have to be careful still. You don't want to let your hair get wet. Then you have to deal with it drying. So you are careful about where you stand, and where the shower head points trying to be as careful as possible.

Lots of little beads of water, hitting your skin. You feel every one of them. They're very uneven. You're very aware of every bit of how uneven the temperature of your skin is too. It's not comfortable. The shower pressure knob has fallen down again, and you turn it up. It's not as bad at full pressure, there are more little beads of water now. It's less uneven. It doesn't feel so wrong.

Even closed the shampoo bottles are noticeable, and the smell is getting to you, especially combined with the heat. If you turned the heat down, your entire body would be in pain, both in terms of muscles tensing into spasms, and in terms of the beads feeling like little knives cutting into your skin. So instead, you let your head rest against the side of the shower, as you become more light headed, the smell overtaking you, making you more and more nauseous and your head start to pound.

But, you need to get clean. So, you force yourself up, and put some of the body wash in your hand. This is another place you're careful, only getting the hypoallergenic stuff. Other things the smells stick around afterwards, and the feeling of the shower that lasts after is increased. But, you wash yourself, as quickly as you can, carefully holding yourself up. You need to be careful that you're fast, but at the same time, you need to be careful not to fall over with the nausea, lightheadedness, and vertigo, that has set in. Rinse. The pressure is more noticeable the longer you're in here. You need to get out, but if you're not clean the entire thing has been a waste. You're almost done. Make sure to get through it. Face, okay, clean your face. Because washing your face in the sink is even harder than this. Any water from the shower falling on your face feels like an attack, so carefully control it with your hands. Get your face wet, wash your face with something carefully unscented. Go to rinse, and accidentally put your face in the stream, it hurts, it feels like your eyes are being attacked. It's okay, it's okay. Make sure your hands are rinsed, and splash your face with your hands, over and over and over again. And after your are sure its clean of any of the soap-stuff another three time. Eyes still won't open because they don't trust it. Just carefully clear the eyes with water and your hands, show them its okay. Open your eyes. It's fine.

By this time you're wobbling, you don't trust yourself to stand. Are you clean yet? Finish quickly if not. Get out as fast as you can. Grab your robe and put it on. Trying to actively dry would be like ripping your skin off, so instead you have to make due with drying with a robe and time.

Go to walk upstairs, but now you've lost the ability to see. It's been too much. You managed to get out without jumping out in order to vomit this time. That's not always been the case. But that doesn't mean you got out without other...challenges? Okay, you want to get up to your bed, because you feel like you're going to vomit, you can barely understand what ground is, and now you can't see. So...feel around in front of you, you know your house. Find the railing to the stairs. Hold careful as you walk up the stairs. The railing changes most of the way up the stairs. Try to figure out how to deal, and just crawl the way up the stairs then. You make it. Get back up, and feel the way to your room. Find your bed, and fall onto it. Head pounding, you feel safe now.

You have somewhere you can just dry now. You can wait it out. You can let your head stop spinning, and stop pounding and go back to normal. You can let your stomach calm down. You can let your sight return to normal. Pull your blanket over you, despite the risk of it getting wet. Now, its just the time to get over all of this. Now its just recovery.

Vision comes back reasonably quickly. The others, take a while. If you try to rush drying then it feels like you're attacking yourself. If you try to get dressed before you're done drying, then your clothes don't stop attacking you even after you're done drying. But its better within the hour.

Except, there are still aftermaths. Your skin still feels wrong. It feels almost disconnected and overconnected at the same time. It feels too rough. Every touch that is made you feel for so long after its made that you don't even realize when its stops because it just keeps going and going and going. And its not pleasant touch, its that creepy crawly this is a bug crawling on your skin and its wrong, except multiplied. It's the feeling the bad part of tickling with out any of the parts that make you laugh, and it doesn't stop, it just keeps going and going and going, no matter what is touched. And then there's pain, pain from touching simple objects. Pain from touching something as simple as paper. Discomfort from touching the air. The only way to keep is under control at all is constant motion. Then those pains and discomforts and the creepy crawlies of every last hair, and cloth, and misguided object, and thing you bumped into, are overwhelmed to some degree.

Things aren't always easy. But, its what's needed.

Being articulate...

You're so articulate. You communicate so well.

People see these as compliments. They are compliments. They don't see the other side of them though, the struggle, the fact that, while being articulate, that's not always there, its only about what can be communicated about. They don't see that they only see what gets out, not what stays in.

People can realize that someone who's nonverbal has a challenge communicating to the world. They at least frequently don't understand what it is, or how it feels like, but that there is one. People tend to be very sight-centric and voice-centric, and push everything around those two things, so when you cannot speak, you are not communicating. In truth, someone who isn't speaking might be communicating, and someone who is speaking, also struggles.

You read my posts explaining how I am, I'm articulate. I communicate well. That's what people keep telling me.

But what about when people keep asking what I want to do, and even if I know something, its such an undefined concept in my mind, I can't figure out how to speak it. And I try to, and it gets confused and scrambled, and I get unable to understand what's going on. And people around me start getting impatient, wanting an answer, because I'm taking a long time to answer a simple question. But its not a simple question, its something that takes figuring out an answer, sorting through the details, converting it into words, filtering the words to speech, and talking. And its confusing to go through that when its forced instead of natural. And then eventually, I probably say "I don't know", because at that point I have no clue, even if I had an idea in the first place. And it likely is quiet, because my voice won't let me speak very loud.

That's fine. That's just not knowing what I want to do. But its going through and trying to deal with this mental stages of communication, that I have to go through in order to communicate when its not natural. I deal with both, natural, when I just know what to do, and unnatural, where I have to concentrate and figure out how to convert thoughts into words, and it takes time.

People usually only see the former. They don't believe the latter exists.

They don't see me crying in bed, trying to explain things, but it just being so difficult to deal with that I'm withdrawing, and crying, because crying makes it easier to cope.

They don't see week after week of trying to get the same idea across, and the problem being me, not being able to get the ideas that make so much sense in my head, to come out in words that make sense.

They don't see me explaining how to do things to people, and leaving out half the explanation as I'm mentally sorting through everything.

They don't see, that every time I go to a doctor, I end up with not having the doctor understand some of my symptoms, because I can't get them explained in words.

Words are hard. Using them, converting to them, struggling to get ideas out, when only a small fraction of the idea is coming every time you speak.

But then, it is enough. You're called articulate. Praised on how well you communicate. Told you can't understand what its like to struggle with communicating with speech.

And you go back, and try again. Maybe eventually, ideas will get through enough for others to understand. Maybe eventually, words will find their way, and it won't be stuck with needing to cling instead of use words because words are too confusing and too overwhelming. Maybe eventually, the words that come out will be ones that are understood by those around you. Maybe eventually.

Until then, its time to just keep trying to figure out ways to get thoughts onto the page, if its repeating the ideas, if its writing them, or if its clinging when needed.

And hoping, that maybe people will understand, that you can both be articulate, and struggle at the same time.

The cost of logic

This was discussed the other day with my counselor, and I realized, its probably something that people don't know as much about.

Sometimes, there are specific triggers, that hit my mind, and I lose the ability to process. This makes sense. It breaks my ability to process, because instead there's this other stuff taking over.

But, in particular, the idea of someone acting in a negative mood and telling me they're not, at the same time, breaks me. It takes all of what's going on in my head and crunches it up and says NO. And then I need to get as far away from people as possible.

Because, you see, what this is doing is saying that every bit of the things I've built up for how to understand people are WRONG. People are not trustworthy, and not only that, my brain's understanding of them isn't trustworthy. I can't trust my own sense of what's going on. Everything is wrong, and I can't understand it. I can't be near it until I have managed to sort it out, figure out what's true, and what's false, and piece it back together. Until people are people, and truth is truth, and lies are lies, and my sense of what's going on is trust worthy.

When I'm interacting with people, I'm not doing so intuitively. I'm analyzing it. I'm analyzing it all. So, when my analyzation has been broken, been told its wrong, I don't have intuition to fall back on. And that's what happens. The analyzing requires the ability to trust the analyzing. And when the analyzing has been told its its innately wrong, then how can I trust it? I need to reset it. To tell it, that no. It's correct.

And until that point, people are absolutely terrifying, because I have no sense of what they are doing, or why. Without my analyzing, I don't know what's going on, and without knowing, its scary. So I want to be as far away from people as I can. So I run, and I hide. Because they scare me because I don't know if they'll hurt me. I have no way to get reassurance they won't. Someone who is coming to hurt me, and someone who's coming to reassure me, and someone who's just being neutral are the same at that point. They're all to be avoided, to make sure to avoid the person who'd hurt me, whether they'd hurt me purposefully or by mistake.

And then, I rebuild, and I wait, until something else is too much. And it'll happen, because I can't just take everything. But when I break, its not just being frustrated, its more than that.

Everyone grows up faster than me

I've felt like this before, like people grow up, and like I don't, and I get left behind. I don't know how to adjust to adult life. When I was younger, I was known for being particularly mature, now, as a young adult, I feel trapped between being a child and an adult, where other people my age are making this transition, and I'm stuck behind, unable to follow.

I don't know how to take care of myself. I don't know how to do things that others find simple. As I've been getting older, my challenges have been becoming more apparent, because being in school was easy for me, but this isn't. And watching around me, other people aren't having this. They went through, they had discomfort as a teenager, they are still not entirely settled as young adults, but they are settling into adult life, getting jobs, and taking care of themselves. They're growing up.

I'm not. I'm stuck here. And I'm left behind.

I've felt left behind here at a few points in the past - I didn't grow up the same as other already. I really miss my friends from high school. They grew up before me. They grew up when they went to college in ways I didn't, and when they made new friends, I only found jonored, and when they started jobs, I hadn't, and they're ahead of me in life.

And now jonored's interviewing, and I'm terrified. He knows this about me, he knows about my impairments, we've been working on me being less dependent on him, but I'm scared, because he's growing up in ways that I'm not too, just like everyone else has. I have to trust him to not leave me behind. I trust him, I trust him to pull me along, going to work and coming home to me, having us work on my ability to work at the pace I can manage (which is currently volunteering one day a week at a school that I want to write about - I'm volunteering at a school for children on the autistic spectrum).

I don't know what to do here as everyone else around me grows up to an adult life and I'm only dragged along behind because I'm not capable of doing everything they are.

Vocational Rehab frustrations, ableism, and thinking before you act

People hear about privilege not uncommonly at this point, in regards to race, gender or sexual identity, even at this point disability; groups of people not needing to put the effort in that minority groups do; groups of people not needing to fight for a voice; groups of people having the privilege of not needing to think about what's going on deeply.

Sometimes people forget these groups are made up of individuals. We can talk about the groups as much as we want, and changing the overall societal view is more the goal in the long run, but individuals, rather than only groups, falling back on their privilege ends up hurting other individuals as well. Groups having privilege effects society, but individuals need to remember their actions as well.

The thing about discrimination is that its often not purposeful. While people will go out of their way to hurt others, its also often that people are just not thinking about or realizing the affects their actions will take. For something like ableism, far too often it even occurs when someone is trying to help.

Lately I've been dealing with this in vocational rehab. The person who's been working with me is clearly trying, yet because she doesn't understand, is falling into this same trap. She wants to help me - she makes that clear - yet she is treating me like either I don't have problems (because I look high functioning), or like I'm incompetent (because I'm having issues with random small things). She's been getting better about this as she learns, and I entirely give her credit for this fact, but the frustration from the earlier meetings remains. Her trying to help has actually caused problems for me because of her not knowing how to help, and this is even in the case of a professional.

This will be something I have to deal with, but the more others think about the effects of their actions and try to determine what the unintended consequences will be, the less I'll have to cope with. Someone who tries to help me find a job, might cause me to feel more worthless if its done improperly. Someone who tries to just have a normal birthday party, might cause me near physical pain levels of overload. Someone doing what they view as just living their life, might directly cause me mental pain.

So really, all I want to say, is to think about the effects of your actions before taking them, even if you're trying to do good. Actions do have unnecessary, unintended side effects. This is incredibly common when dealing with privilege. This has been affecting me a lot lately. Luckily vocational rehab is getting better, because she is learning how to deal with my case rather than other cases she's worked with, but its still something I'm having to deal with.

Emotional Support Animals (aka Tuttle gets a cat :))

This post I've been meaning to write up for the past week and have been being distracted from it every time I go to start. The distraction is rather straight-forward - she's 11 pounds, just over a year old, and a brown tabby :).

Earlier this year, I heard about Emotional Support Animals, since that point jonored and I had been looking into the possibility of me getting an ESA. When I was younger I functioned far better in many ways because of the pets. When I went to college, me not having a pet had a huge affect on me. My inability to identify my own emotions suddenly because far more of an issue; not knowing when I'm slightly upset means that its far more likely to hit very upset. Stress has started affecting me far more. I've been having many more meltdowns and shutdowns. I have been getting even more needy with attention from jonored because of being lonely with others not having time for me (as they actually do things like work and I'm still unemployed and am unable to drive.)

So, I started researching ESAs. Animals often help the people they are around, even by just be there and acting the way they normally do. Emotional Support Animals are animals which reduce the impact of their person's disability by acting as a pet does, rather than requiring special training like a service dog does. Rather than going out in public like a service dog, they stay at home, and only have rights when it comes to housing, flying on airplanes, and possibly a few other very specific situations.

The main right than an ESA has is that they are allowed in pet-free housing (or if there is a fee to have a pet the fee must be waived). How this works is rather straightforward. A physician or licensed mental health worker must write a letter for the disabled person stating that the person is disabled and should have a cat, dog, or whatever sort of animal in order to help with their disability. This allows for the request of letting this person have their ESA with them be a request for accommodation. As long as its a reasonable accommodation, (so you can't have a dog that barks all night and keeps everyone else up), then denying the accommodation is discriminating against the disabled, which is illegal. (However, the person is fully responsible for keeping the animal well behaved and all damages that it does).

This does require the person to be disabled. This can't be used to let a random person take their pet into an apartment that doesn't allow pets. Simply someone having an anxiety or depression diagnosis isn't even enough, because its built around the person being disabled, not simply having an impairment. However for those of us who are disabled it can mean a lot.

So, we went through this and talked to my doctor and she'll write up letters whenever I need her to. She specifically has stated on multiple occasions that she thinks I should have a cat.

On December 31st, we got me a cat. We'd been looking at a kitten the week before but found out we'd not be able to get it, then went and looked at the local cat shelter, and ended up coming home with a kitty.

She's a nice cat. Just over a year old, very playful, very alert, and surprisingly good at learning not to scratch things or not to sit on my computer (though she's still working on those). She also is crazy in certain manners like how she'll meow at you to come and stand in the kitchen with her so she doesn't have to be alone in the room while she eats. We named her Kitty Ada after Ada Lovelace (Kitty is her title, in place of Lady)

We've definitely already seen situations that she's helped me. If either of us are upset she comes up and meows very clearly saying "You're supposed to be petting me, not moping, cheer up and pet me already."

She also helps me regulate my emotions and identify when I'm upset. When I'm upset she'll come up to me, and her being there helps me not become more upset. In these situations I'm unable to go out of my way to try to regulate my own emotions because she's identifying them before I am.

However, probably the most relevant situation, is that she has already shown that she can prevent meltdowns. I get depressive meltdowns - didn't when I was younger but between not having animals around and dealing with much higher stress I started getting these. I also get shutdowns. Despite the fact that shutdowns tend to last longer than meltdowns, I find them easier to deal with. I was faced with something that is a huge meltdown trigger for me and managed to hold it off until I was around Ada. I sat down and she came up next to me and I started petting her. Somehow she managed to cause me to disassociate in a positive way, externalize my being upset, and just have me sitting there thinking "I have a kitty." I also lost speech for 3 hours, but I didn't have any sobbing fit. It was very good of her.

I'm definitely glad we went through and got me a cat. Some things will be harder now, but she's definitely helping me as well.

My path to diagnosis and the diagnosis process

As I last covered what are the benefits of getting a diagnosis, it seems logical to actually complete this post about what the diagnosis process was like for me. As this is from my memory there are likely mistakes in the early parts of it - I don't remember exactly when everything was.

There are three main paths to getting a diagnosis - hearing about Asperger's (or whatever else) somehow, deciding you match the symptoms, and finding someone to professionally agree or disagree with your self-assessment; seeing a professional for other reasons and it being identified and diagnosed; and getting someone else bringing you to a professional to see about a diagnosis of something (usually in that case the person bringing you is a parent). I consider my process of diagnosis having taken 9 years and consisting of bits of each of these paths.

During the 2001/2002 school year I was in seventh grade. It was during this year that we split my math education off from the school system. During this year we also tried asking about me going up to the high school for math while being in the eighth grade the next year. The school system denied this request. This was the last straw and we started looking into me going to a different school, and decided on me going to a charter school (essential school specifically), in the fall.

It was also either that school year or the summer after that for some reason that I'm still unsure of, possibly being worried about bullies but I have no idea, that my sister and I each had an initial meeting with a psychologist. She decided that my sister had no reason to see her again after one or two meetings while it was worth it for me to continue seeing her. From those meetings I remember turtling a lot, not knowing what to say or how to make decisions (like normal for me), and going through the decision process of whether I should go into the 8th or 9th grade in the fall. (We decided for various reasons the 9th grade would be better, one of the people running the school thought I wasn't socially ready to skip a grade, 3 weeks into the school year they realized they were wrong, moved me up, and I was in a far better place socially after skipping a grade).

At some point she diagnosed me with social anxiety developed from being bullied in school. This ended up relevant when later in the year I ended up sobbing in school and in a terrible shape. In this new school we swapped who was in classes together every 6 weeks. One of these occurred and I was put into a class where none of the people I knew well were and one where most of the people were those who didn't do their work. I couldn't cope with this at all. Because of my social anxiety diagnosis I ended up with a 504 plan that said they couldn't place me in a class without one of the people I knew best. They dealt with this by always putting me and my best friend in a class together rather than having to deal with a larger set of people that they needed to have one of them in the class with me.

I don't know exactly when I stopped seeing her. I'm pretty sure it was during 9th grade. Whenever that was is also the first time I heard of Asperger's. Before that point I'd only ever heard of autism at the non-verbal level. I'd never thought it might apply to someone like myself. The last session I had with her she told my family and I that she thought I had Asperger's and that she'd be unable to help me anymore because she didn't work with people with ASDs.

So in 2002 or 2003, I first heard that I was likely autistic, yet at that point I wasn't diagnosed, and didn't go on to see anyone else. What I was told at that point was that because I was high functioning and female, it wasn't worth pursuing a diagnosis. The bias against being female and autistic was strong enough that it removed the little benefit that I'd have gained at that point as I was successful academically. The other thing I was told at this point was, like her not being able to help me anymore, that I'd not really get any help from anyone who didn't work with people on the spectrum. So the recommendation was for me to see someone who worked with people on the spectrum who didn't require a diagnosis.

Of course most people who work with people on the autistic spectrum want diagnoses, and because I wasn't diagnosed I couldn't work with them. This means that at that point I didn't see anyone because of the lack of diagnosis. I don't know whether I would have if I did have a diagnosis. So through tenth grade and the beginning of junior year I saw nobody for any of this.

Junior year was interesting when it comes to all of this. For junior and senior year I went to another different school - in this case, I had been accepted into the junior and senior year only exam school. This school accepts 50 students per year of those who apply, of their choice, and push these students incredibly hard junior year such that your effective freshman year of college that follows senior year seems like an incredibly easy break. While my parents have very low opinions of this school, it did a huge amount for me, though it wasn't simple even outside of academic situations. I had problems come up that should not have came up that, as I found out years later, meant that they almost kicked me out of the school.

Junior year I ended up having rather problematic miscommunication problems with multiple of the teachers, without my knowledge that it was happening. I had one teacher convinced that I was lying about doing my homework because of being uncomfortable presenting when I wasn't completely sure of what I was doing. (I'd done the work but I wasn't sure that I was right.) I had another teacher convinced that I didn't understand the foreign language at all because of not participating in conversations that I had no interest in nor knowledge about content of. Because of these types problems, we ended up needing a meeting about me not leaving the school. They ended up agreeing that I'd stay in the school as long as we pursued help for me.

This ended up leading to me ending up on anxiety medication and seeing a therapist. We managed to actually find someone who accepted me and worked with adolescents on the autistic spectrum. Her specialty was "social learning disabilities". I still don't think the medication was worth it - the first one caused interesting problems (I'd remember to do my homework and forget to turn it in), and the second one I was unable to tell if it helped and when I eventually weened off of it I ended up with near daily migraines. However, seeing that specialist was incredibly good for me. She worked with me using the knowledge of Asperger's rather than treating me like any other person and helped a lot. The difference between me at that point in junior year and when I went to college was something I could tell.

In college, well senior year of high school, I found the SFS. When I got there, the SFS was so aspie friendly that we ended up at one point with everyone in the room identified with Asperger's to some degree. This was incredibly good for me in a different way than my high school friends were (who I still feel far closer to and still trust far more, but didn't have this particular aspect of being able to relate on this topic).

Unfortunately, relating to Asperger's went a bit too far in the SFS at this point in time. It became such a big thing that it started bothering me to have people identifying with it with as little information as they had. It started feeling like with so many people involved people started holding individuals to expectations created because of other individuals who may or may not actually have been on the spectrum. Relating to this was good, but at the same time, we were going over the top. I no longer felt comfortable identifying with Asperger's. I stopped considering myself self-diagnosed. When I started thinking about it again I ended up deciding that I identified as not neurotypical. I wasn't sure what I was, but I was clearly not "normal".

The June 2008 was the first time I was on the lease of an apartment. The July 2008 my grandmother died. January 2009 I started my MQP (in major senior project). January 2009 my grandfather died. March 2009 my other grandfather died. Throughout this entire time the group of people in that apartment were not an appropriate one. We'd thought it'd work fine, but different needs for things like temperature just didn't mesh at all. I ended up crashing hard. My mental state couldn't deal with so much going on at the same time, especially so many deaths in the family.

April 2010 I got a new primary care doctor. She thought it was incredibly important for me to see a counselor after how that year had gone and how much it was affecting me. For all of 2009 I had basically pushed it off, focusing on academics, and when I finished my MQP in December 2009, I was unable to cope. I no longer had something to throw myself into and without something to do, everything that happened hit at the same time. We went through who was available in my insurance, found someone, I tried seeing her. She was good but hard to get to, looking back I agree that she wasn't worth the awkward travel, though she was far better than I expect out of a generic counselor. We tried looking for someone who would see me who worked with people on the autistic spectrum, people kept either not returning calls or being unable to take someone without a diagnosis. We found someone else for me to try, she didn't work at all for me, I regularly left her and went home in tears. That didn't work. We needed something else.

During this we process began the research of what it actually took to get my a diagnosis. My parents got a recommendation from a local autism resource center for a particular person for diagnosis (as well as some counselors we tried to get in contact with, but failed at). October 2010 we met with this person for the first time. We went through an initial review of me and my past. After this meeting he decided that yes, I should be evaluated for Asperger's, and submitted a request to my insurance for them to cover it. They denied it saying that they didn't feel it was necessary for me to be evaluated for some reason or another. When the second of those counselors failed so drastically my parents decided that we were going to just get the evaluation anyways, going ahead and paying themselves instead of via insurance. (Later the cost was included in the insurance deductible because of ARICA having triggered in January 2011).

July 8th, I had a 4-5 hour evaluation done.

July 14th I got the results, a diagnosis of Asperger's Syndrome, and an 11 page report of the evaluation.

The diagnosis process

This might should go in a different post, but I think of them together whenever I think of the subject, so they're going to go ahead and be together. I'll at least set it apart with the above header

The diagnosis process for me consisted of three meetings with a neuropsychologist - the background information, an evaluation, and the results meeting.

The first meeting was entirely background information, both my parents and I were interviewed about me at work (of which there was little), at home, and at school throughout my life. A wide variety of questions were asked including about my past with mental health professionals and why we were pursuing a diagnosis. This meeting ended with determining that he agreed that I was likely autistic and that further testing should be done to determine whether that is true.

The second meeting was long. I went in at 10 am and left between 2:30 and 3 pm. This meeting was the primary evaluation. These hours were spent primarily with me doing tests and answering long lists of questions on paper. For each of these he observed me taking it as well as looking at the results of the tests. There was also a bit more verbal questioning but not much of that.

The first thing I filled out was a way too long multiple choice question about general mental health, the Personality Assessment Inventory. Mostly this was long, though I might have confused him with some of the questions I asked while filling it out. They were certainly not normal questions.

The next major thing I did was an IQ test - the WAIS-IV one in particular. I definitely don't think my score on this was actually accurate but it got enough of the information necessary across. This was used to compare my IQ percentile to my later percentile on things to do with recognizing emotions in others. The reason I find it innacurate was because I ended up beginning to completely shutdown in the middle of it because of how the testing was going. I had to give quick definitions for words until I stopped being able to do so with the list he was giving me. I'm not sure whether he noticed that the point that I failed was as soon as the words became emotions based. This was fine, except that I was shutting down beyond just being able to answer those questions when I was unable to answer word after word, all of the same type. Also of note was the memory test where I had issues focusing on trying to remember the numbers being listed rather than putting the effort into trying to find a pattern so I only had to remember the pattern. I think I mentioned that to him on that subject. It was just so hard to not look for a pattern instead of just remembering the numbers.

I also had to do some arithmetic, reading, and spelling tests. I'm not quite sure why those were there. One of the reading tests was amusing however. He gave me a thing to read, told me I'd read it while he measured how fast I read and then I'd have to answer questions, and specified I had to read for content rather than speed. I asked him "What if I finish reading before the minute is up?" got the response "You won't", asked again "No really, what if I finish early?", got the response "Well, I guess you finish early then, but nobody's done that yet.".... So I read it and when I finished I looked up and said "I'm done" and surprised him. I think I finished in under half a minute. He questioned the reading for content and I reassured him that no, I really did read that quickly, I really had to ask him that question before hand. In my later report he noted that all he could get in my reading speed score was that I read faster than 99% of college graduates.

I also had to do multiple tests on executive function. This included the Trail Making Test, as well as the Conners' Continuous Performance Test. The latter one was frustrating. I had to click the space bar after every letter that popped up on the screen that wasn't an X (and only letters popped up). It didn't matter how much I focused, I kept failing to not click the space bar on the X. He eventually noted that my results on that were borderline ADHD levels, but when he gave me the self report scales for ADHD there was no way that I matched the symptoms on that

And then there's the tests that specifically have to do with autism diagnoses. For this I had the AQ test, EQ test, pictures of faces to match emotions to, voices to match emotions to, voices to match to faces, and stories that I needed to answer whether anything someone did was 'awkward', and why. I feel quite awkward not including more here with this being such a big part of the evaluation, but it really is far more straightforward than the rest of it was.

Anyways, the third meeting was when I got my results. He wrote up an 11 page report on what he saw from watching me and going through my test results. This meeting was going through the basic points through all of it, making sure that it made sense to my parents and I (as my parents went with me, it was my choice if they went). He asked after going through this whether anything he'd said was surprising, my parents responded no, and he then gave the diagnosis matching how he'd described me. I was then given my report that has been useful to have. How he went through this, giving the description before the diagnostic label was really the appropriate way to do it. If someone wanted a result they'd not be able to complain about the result when it occurred after the description, while if there were inaccuracies, they'd come up. That followed by specifying the describing the symptoms rather than the person (so the individual can identify as autistic or having autism) was a really nice way to get the results.

Once I got my diagnosis I was really able to start associate with this. Before that point I'd been too uncomfortable to do so much. Now, well, it rather turned into a special interest. Oops?