Autistic

December 1st the committee agreed on the final version of the DSM-5; in May 2013, the DSM-5 will be published.

One of the most talked about changes from the DSM-IV to the DSM-5 has been in autism - they're changing it so that instead of having the separate diagnoses of classic autism, and Asperger's and PDD-NOS, they just have the diagnosis of Autism Spectrum Disorder, with severity levels. People have been felt very strongly about this, argued about it a lot, and now, as of December 1st, its finalized, the diagnosis in the DSM-5 will in fact be Autism Spectrum Disorder.

I've been incredibly supportive of this change, and have been using the word autistic, specifying my diagnosis is Asperger's for a while. Now, we're all just autistic. This is better for the stigma for everyone on the spectrum to me - people are more individuals now. Yes, there are subtypes. But the subtypes aren't "Asperger's" vs "Classic Autism" - that split isn't a very meaningful one, and they are talking about taking into account details of individuals for people's diagnoses.

Will everything be the best it can be? No, but it should be better than it was.

I started using the word "autistic" to refer to myself instead of "aspie" for a few reasons including:

• Inclusion of the entire spectrum, caring about what everyone on the spectrum wants, and general disability rights
• Relating to what people elsewhere on the spectrum describe - including nonverbal people
• Having issues with stereotypes of Asperger's; I am neither active-but-odd, nor NVLD, and people treat me as such, using "autistic but speaking on time" actually has people treat me better than "Asperger's

For me, the DSM-5 is a better description. I'm clearly a case of Asperger's, but I'm also passive, not active-but-odd. As it is, we'll have to see what actually happens. It's been too talked to really know what it is at at the moment. Likely, not much will change.

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.

I don't want to be cured (and that's not because of privilege)

The argument about whether autism should be cured is one that really frustrates me. People on both sides tend to talk in absolutes, about how its entirely wrong for anyone to want to be cured, or about how nobody would want to be cured. Both sides are silly and extreme. It entirely seems to be something where some people will want to be cured, and others won't, where if a cure existed and people could choose to have autism removed, without pressure from others to require it, it would be reasonable. Like the people against a cure, I'm scared of the possibilities associated with one - I'm scared that a cure would be forced on people, or that people would be even more discriminated against for choosing to not suddenly have a large part of them changed. I'm scared that people who are already treated as being incompetent wouldn't be given the chance to say what they want. I'm scared that someone who's nonverbal wouldn't be given a choice.

Really, that's what it comes down to for me, is that people should be able to choose for themselves; not people choosing to make life easier for others, not people choosing to make everyone the same - people should be able to choose what they want for themselves.

Which sets the scene for where this post came from. People were once again arguing online about whether a cure should exist or not. Generally I stay out of these discussions, but this one was getting more unreasonable, effectively claiming that its wrong to ask for people to treat a nonverbal little boy as a human instead of an empty husk, and saying that anyone who's really impaired would want to be cured.

The truth is, that there are people at all "functioning levels" (though I dislike the phrase) who don't want to be cured and who do want to be cured. There are people who can "pass" without much effort on their part who would be some of the first to jump on a cure, and there are nonverbal people who don't want a cure and who will write about this. Knowing this, I had to explain. I have issues with not responding to people online when they seem actually misinformed, especially because of wanting to make sure that others don't become misinformed. This was a situation where it didn't seem like others would, but I still had to respond.

So I responded, and then thought it'd be relevant to write about here.

There are a few different reasons why people don't want to be cured. Most, if not everything, I've read describes multiple of four main reasons why people don't want to be cured

They don't want to have to relearn how to live life without autism.

Autism is part of them, and has shaped their entire life up until this point. Removing that means they'd have to near completely have to relearn how to live as a neurotypical person. The amount that would need to be relearned is often entirely forgotten or at least underestimated.

They have a strong sense of self identity

Their self identity in this case includes their autism, and they don't want to change themselves, but instead work around their issues. They want to get better at coping with the challenges, but they explicitly want to do that without removing them, because autism is part of themselves.

They want to succeed specifically as a disabled person

They want to succeed, even in a minor way, and share their abilities, as a potentially severely disabled person. There are people who are nonverbal who want to share their stories and have people learn about their abilities, about what they can do, about what they can do for others, without speaking. Doing this while nonverbal is about more than themselves, is about more than autism, and is about more than disability as a whole; its about people and how we judge each other and how we treat people based off of that judgement. Having those disabilities can make it easier to show people weaknesses they have and strengths others have. Some people value sharing that more than removing the struggles of their life.

They are happy as they are.

This seems like something that doesn't need to be stated, yet it seems to need to be stated. People can in fact be disabled and happy.

Of course this won't include everyone on autistic spectrum, but it is a solid subset of the autistic community, even once you've limited the community to those which would be legally disabled. Not everyone wants to be cured.

So to those who argue that because they want a cure everyone who is "really disabled" does, there is nothing wrong with you for personally wanting to be cured. There is something wrong with you saying that others always have the same preferences that you do. It can be hard to learn that others have different preferences than you do. It took me until my teens to really understand this - that it wasn't that other people were pretending to not like things that I liked and pretending to like things I didn't (beyond things like food), but eventually I learned. These people, those who don't want to be cured, including some of us with Asperger's, some with speech delays, some without the ability to speak, do not have the same preferences as you do. They do not think in the same manner that you do. They are still disabled; they are still struggling with things far beyond many people's comprehension; despite this, they would choose to remain disabled when given the choice.

I personally am among that group. I have impairments with verbal communication (I remember being taught in speech therapy how to use tone of voice to ask a question along with the other speech therapy that I remember all through elementary and middle school (as well as 10th grade); I will go nonverbal for hours at a time if triggered; I don't know how to discuss emotions or how to answer questions about how I feel; I can't always communicate what I'm trying to say.) I have impairments with non-verbal communication (and often feel like I have "positive" and "negative" for what I can read on people's faces). I am socially inept, and am still finding out more and more how bad I actually am at this. My hand-eye coordination is bad enough that people have literally made a drinking game out of betting how terrible me and one other person will do at video games (they're the ones who would theoretically be drinking, we're just that bad to start, its hilarious) and have had people at times think I am actually faking. I have severe sensory issues, beyond what most people realize occurs. I cannot drive and never will be able to. I cannot take care of my one bedroom apartment on my own (and am really lucky that my boyfriend is entirely comfortable doing the parts I can't, because cleaning a bathroom isn't an option for me). I am applying for SSI for disability because every professional who's attempted to help me find a job has told me that either I should apply or that they just have no clue how to help me. I am without question disabled.

Yet, don't want to be cured. If I was given the option of removing my sensory issues, I'd almost certainly deny it (though I would ask for my migraines to be removed). If I was given the option of removing all of my ASD the question would be even simplier, there is no way that I'd make the decision to not be autistic. My reasoning personally falls into all four of the above areas.

My Asperger's doesn't make me unhappy. Certainly it makes me have to deal with things that will make me unhappy that other's don't have to, but it doesn't make me unhappy. I can't say I'm always happy. I'm human, I deal with problems that I don't want to mention on things like this forum that will make me unhappy, but overall, I know that my life isn't bad, and I know that I can get through the periods of time that I'm unhappy and get back to my default optimistic, happy, autistic self.

How I go about my daily life is absolutely dependent on my ASD, both in things I avoid, and in things I do. It would be far more difficult than people realize to have to relearn how to do things as complete as how to do dishes and those activities people take for granted.

I have an incredibly strong sense of self identity. I am Tuttle. My asperger's is part of me. I am autistic. I am me.

And something that I've only recently learned - my ASD has given me abilities because of the impairments. I don't mean despite the impairments. I don't mean that I got random gifts with it , I mean the impairments themselves are along with impairments, abilities that others don't have. The fact that I can't walk to the grocery store (a quarter mile away), and back without disassociating if its night time is not a good thing. It's not a gift. And yet, having to deal with that, knowing I deal with that, and sharing that I deal with that, has given me the ability to affect other's lives in positive ways that someone without that would be unable to do. People who disassociate for entirely other reasons have been able to learn from me. Professionals are able to tell parents things that their children are dealing with, such that the parents can change their actions to ones that aren't problematic for their child. People can learn. People can change. People can have happier lives, whether or not they are autistic, because of my impairments. How could I, personally, say that I'd take my life being easier, not necessarily any better, but easier, in exchange for not being able to continue learning, and continue sharing, and continue helping others because of these challenges? How could I say that I'd take my life being easier in exchange for other people's lives being less pleasant? It's not something I could do.

Not everyone is called to that. Not everyone has that manifestation of autism. Not everyone is called to put others before themselves to the point where it is actually likely a weakness. Not everyone has the interest in determining what they about themselves, and using that to share information with others that they didn't necessarily have. But some of us are. And the fact that we are impaired, the fact that we are disabled, the fact that some of the people I've read blogs of are nonverbal, does not change that part of us, the part that would choose a hardship for ourselves for the ability to make a difference in improving others lives.

When you really think about it, any cure would be a question of trade-offs. A majority would sacrifice some abilities that are associated with autism for those associated with being neurotypical. (There are known things that autistic individuals do better - for example processing visual data, autistic people still notice things out of place that they're not explicitly told to look for when there is more data that they're purposefully looking at while neurotypical people will not.) All except making people actually process information the same and just have better coping capabilities would lead to people needing to relearn self care skills. All would require choices of changing oneself.

It's a trade-off. It's a reasonable question for individuals to have their own answers to. In my case, I don't want to be cured, and that's not because of me not having reason that would lead others to make a different decision, its because I'm me and this is my decision.

Sensory issues, or some of what it takes to walk down a city street

Walking down the street, you likely notice that cars are going by, the smells of the restaurants, the smell of cigarette smoke from the people smoking on the side walk. You likely see lights at things like crosswalks and on the cars. You likely are somewhat aware of what you're walking on. But its generally simple. There are things you like and things you don't like, and you will go towards things you prefer and away from things you prefer to avoid. When you can't avoid it, you'll likely be unhappy, but it won't be a big deal, you can get away soon enough. Things tend to be noticeable, but don't rule your life.

At least, this is what people tell me. Their descriptions vary, but generally it comes down to, there is a norm for sensory input, that involves all senses functioning, senses regulated, and the sensory input not needing to be the focus of something as simple as walking down the street.

I say "this is what people tell me", because this isn't what life is to me. This isn't what walking down the street is to me. I actually can't even imagine it. I can't imagine that little input noticed; I can't imagine things affecting me that little; I can't imagine it being that simple.

People notice the cars, the sirens when they go by, the noise of everyday city life. However, I don't just notice these. They completely overwhelm me. An ambulance going by will, at times, literally freeze me in my tracks. A car revving or a loud motorcycle will do the same. In order to keep walking, in order to not just get so overwhelmed I can't function, I'll dig my fingernails into my palms. I'll fidget with things, clench my hands, start signing things I want to say to people when I get to where I'm going. I'll wear earplugs (though not always, because they itch in my ears). When breaks screech its an attack on my ears. It physically hurts. My muscles tense up, headaches are worse, it just hurts. When I get to where I'm going I'm still on edge from the constant bombardment that is city life, and that's just the sounds.

The smells, those are so much worse. People who know me at all know this one at least. Those smells that are offensive to others are migraine triggers to me. Those smells that others dislike, I'm fighting to keep from vomiting from. Those smells that others don't even notice, they do the same. Walking down the street, you smell cigarette smoke as you pass someone smoking, but apparently most people don't smell it when they're half a block downwind from anyone smoking. I struggle to have people realize that my reactions aren't just psychosomatic, as they don't realize anyone can smell things the way I do. And the smells, they're too much too. The headaches, the nausea, the attempting to breath properly, that's normal. That's everyday. Being looked at strangely for wearing a mask when I'm walking down Main Street, or waiting for a bus; having parents pull their children away from me; having people randomly take pictures of me because they're not used to someone wearing a cloak and face mask walking around downtown - those vary in frequency, but only the random photograph is something that was so infrequent as to phase me. And that mask that people treat me differently when I'm wearing, its amazing. It lets me walk all the way to city hall without starting to get a migraine (though not all the way to the library across the park). It's amazing to have a full 15 minutes of walking down Main Street without beginning to develop a migraine. That's three times as long as I normally would get without the mask, and that's huge. People realize that dumpsters smell bad, and that sometimes people smell bad, and that tends to be something they understand can trigger the nausea, but walking quickly or on the other side of the street is (apparently) usually enough. The strange looks, the constant fighting of headaches, the planning my schedules around the smells, actively avoiding some buses and never going on those routes, planning when I walk and when I bus based off of how many people are riding vs walking vs taking smoke breaks, that's my life.

And those lights, those lights people see, those can be blinding. Those can make me unable to process what's around me until I've regained the ability to process. Those can make me, and often do make me, disassociate. All of the light, the sun, the headlights, the streetlights, everything, can make it so I can't even process the "walk" sign, especially when I'm being overloaded in other senses. Luckily I can function from 'don't walk when its orange' or 'walk when the sounds meant for blind people are chirping', but it still comes down to not being able to visually process certain details at times. When I say that I don't think it'll ever be safe for me to drive, people tend to underestimate what I'm saying. Walking down the street at night, if I was not terrified of cars, would likely be unsafe. People's descriptions of being blinded by the high beams on a car confuse me a lot. I don't understand what they mean by those being high beams, the lightest low beams are like that. What do they mean that the low beams give them light and the high beams are blinding? And that's before the disassociation. If its night time, I can rarely even walk home from the grocery store a quarter mile away without disassociating. It's like I split into multiple parts, and can't do more than execute the program of "walk home avoiding cars". I'm glad that other people on the sidewalk notice people, because I've almost walked into people often in this state (and only notice it after the fact). I already need to plan when I'm going to the grocery store around the smells, and now that we're adding lights in, walking home once its dark gets overwhelming. And yet, that's the easy option. For me its easier to deal with regular disassociation, to find ways to work around the fact that the lights are so bright that it hurts, that I can't see properly, and that I can't even be all together, than it is to deal with everything else if I avoided that. It'd be even easier to avoid the grocery store, but I need to eat somehow.

Now add on to all those sounds and smells and sights that you notice, noticing all those details (except, ironically, those that people expect you to notice on people.) That's not just a hand telling you to not walk, that's a lot of little lights, and they're not all working, some are out. The post is rusting and the trees behind it aren't just trees, they're full of leaves, which aren't all the same colors even within a leaf. And those disgusting smells, they're not just one smell, there are all these parts of various types of trash and various types of decomposition. And every little bump on the sidewalk is there, the new trash that you feel terrible walking by after people have thrown out of their vehicles, the dead animals at the side of the road. It's all there. You see it all, you hear it all, you smell it all. You don't see only a road scene, you see everything in that, and process it all.

And that's just being on the street. Not even walking yet. Because once you get to walking there's movement of your body. And because that body doesn't process everything normally, there's stumbling and being generally clumsy. I've mentioned before sensory issues to some degree, and mentioned this then. But that's not always acceptable. Sometimes people are expected to wear things other than shoes with toes (for some strange reason), and because trying to get a job is more important than a sprained ankle, shoes for interviews go ahead and cause walking down the street to cause sudden twisting of an ankle because of not being able to feel what's going on underfoot. I'm still dealing with my ankle being in pain after last Friday, and I've not even gotten to interview with anyone, just had to wear the silly shoes to prove to people I could dress professionally.

The sights, the smells, the sounds of the street. Walking and having to deal with processing information and not hurting yourself. If you ignore the weather, and assume everything on you is comfortable, despite even "comfortable" clothing being too much at times, then for the 5 senses people normally think of you can get from point A to point B (as taste is not very relevant for walking down a street).

But that's only the start of this. That's only the start of having unusual sensory processing in the ways that I do. Because that suggests once you're off the street that things are easier. That suggests that the vestibular and propioceptive senses don't exist. That suggests that only hypersensitivities exist, not hyposensitivities, not seeking this input to regulate oneself, not difficulty planning motor actions, or difficulty discriminating between different sensory inputs. That suggests that input can be dealt with and ignores it being overwhelming, breaking all ability to function, even after its gone. That suggests that removing input is all that's needed and ignores that even once the input is removed the recovery still takes time, and during all of that time there's extreme sensitivity to everything else, including non-sensory. Not to mention, while it certainly does a lot and certainly more is removable than people immediately think of, there's only so much input you can remove and still be able to get to a doctor when you need to and when you can't drive.

And this is my life. This constant overload. This constant bombardment of sensory inputs attacking me from all sides. My body not knowing how to habituate to anything going on, so hearing every tick that clock makes that others tune out. My body hyper-tasting and yet still craving strong foods (but only some, only my choice). My body having poor sense of where its joints are, and not being able to walk straight without vision. My mouth still at times having a hard time pronouncing words that I should know how to do, and my hands having such a horrible time at video games that people make drinking games over watching people like me play them. My body dealing with everything until it can't take any more, and it shuts down, doesn't let me speak, doesn't let me move, doesn't let me even get away from known migraine triggers at times. Or instead, losing control of my mind and snapping at people and sobbing, because the fire alarm has been beeping for a new battery longer than I can take.

Not only is this my life, this has always been my life, I didn't know some of this was abnormal until this past year, and this will likely always be my life, because while therapy helps and new coping mechanisms help, how I perceive the world is just different than normal people see it.

Simply dealing with what's around you, even ignoring the people, is so much, that I can't understand how people are surprised when a child throws themself to the ground screaming, unable to cope. Simply dealing with everything is so much, that I can't expect how people overlook it all. Simply dealing with everything is so much that I have no clue what its like for it to be simple.

They say it is. But its not for me.

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.

Ableism

They say everyone has problems.

They say if I only try harder then I'll be fine. I'm just not trying hard enough.

They say its my fault. It's my fault when I'm hurting. It's my fault when I'm feeling guilty.

They say I'm faking for attention.

They say that because I can speak, I can't be autistic.

They say that because I can ask for help, I shouldn't get it.

They say that as a female adult, if I'm contacting about help to do with ASDs, it must only be because I'm a neurotypical mother of an autistic child. I can't be looking for help for myself.

They say that nobody likes headlights.

They say that I have no reason to care if others smoke.

They say that sirens bother everyone, and can't cause me actual pain.

They say that the flashing of florescent lights can't be visible.

They say that if something is labeled ultrasonic, you always can't hear it.

They say that if it doesn't bother them, it can't bother me.

They say that I can't be disabled, that I can't be autistic, that I'm only a little different.

They say that if I only tried I could drive, and that I'm just being defeatist.

They say I'm just lazy when I don't feel like I can go to the store.

They say that I'm too smart to not have a job. They say I shouldn't need help finding one. They say its my fault I'm not working. They say I don't have real problems that make it more difficult to find, keep, and complete the requirements for a job.

They say its all me.

I say that I'm trying.

I say that I'm doing the best I can.

I say that I am making progress, even if I sometimes can't see it.

I say please stop blaming me. It makes it all harder.

I say let me be myself.

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.

Shoes with toes (and sensory requirements)

Vibram five fingers, and other minimalist footware have started to get common enough that a decent percentage of people know about shoes with toes existing, but few people I've talked to know why people use them (except that they're popular for running). When people see mine they often question how I like them if they've heard of them before, or look strangely at my feet in confusion.

I've warn five fingers almost exclusively since Christmas of last year when I got my first pair. In this period of time the only time I got close to hurting myself while walking was while I was wearing boots. Even walking on ice, if I slipped with these shoes, I was able to react without risking hurting myself at all, despite these having what people view as a sole that isn't grippy enough.

The reason is simple, these shoes let me feel the ground through them. Normal shoes, I'm walking on a platform that isn't actually on the ground and have no way of knowing what is going on under my feet through touch. I'd recommend these shoes to people in general for this reason, but would do so even stronger for people who, like me, need to put effort into managing sensory integration.

ASDs, do tend to come with sensory "issues" - hypersensitivity, hyposensitivity, integration issues, or so on. Beyond that, I also identify with SPD (despite not having been diagnosed with that) - Sensory Processing Disorder. For people with both an ASD and SPD the borderline between the two is incredibly blurred. Both ASDs and SPD however cause people to have different sensory requirements than the norm; hyposensitive or hypersensitive, and avoiding or seeking input, the requirements are different.

Personally, I'd consider myself hypersensitive (without question) and seeking (though I avoid things that are headache triggers). Despite hypertasting, spicy food is something I eat rather than avoid; despite hypersmelling, I'll use something that's 50% peppermint oil when someone else would use aromatherapy levels; despite hyperfeeling, I want the input of as much detail of what's under my feet as possible.

Autistics Speaking Day (one month late)

One month ago was Autistics Speaking Day.

One month ago I thought of starting up this blog, because it was something I was meaning to do.

One month ago I sat down at the computer and was unable to write.

One month ago was one of the few days since I started participating in the autistic community that I did not make a forum post.

Three and a half weeks ago I wrote my first post on here

Yesterday I found this autistic speaking day post.

Today all I can say is that even though she clearly is more severely affected than I am, that's the absolute best Autistics Speaking Day post I have seen.

And today I say thank you for letting me have an easier time than others with this. Thank you for this not being something I've needed to say because while those days are rarer for me, I've not been pushed on one of those days.

(And on the note of that blog, this post of hers is the best written thing I've seen about the use of the word autistic instead of the "person-first language")

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?