Noise

Reading, wanting to communicate, struggling to get ideas out. Okay, I'll sit down and write. I can do this now. It's a way to get ideas out. I can explain how I feel and how I live.

Right, I have stuff to do on this topic. That's a specific thing to do. Explaining about how life is harsh, and you can't just always focus on how you cope, because if you do that then you deny what people deal with.

Writing. Starting to get in the right mode. I can do this. It's starting to work. I've been stuck not managing to do this for months, but its starting to work now.

Type type. type type. type type.

People coming up and trying get me to do other stuff, interrupting all my thoughts. Losing it. Losing it all again. Don't want to lose it.

Please, let me keep the right mindset. Please. Wrapping up. Curling up. Smaller, smaller. Pulling in.

Walking away, realizing they were interrupting me, maybe kept it, back to trying. Writing quick ideas down to remember thoughts.

RING RING

Stupid phone.

SQUAWK

Too much noise.

Talking. So much talking. Squawking. Squawk squawk. Thoughts are running away. They're leaving.

Getting harder to string ideas together. Can communicate well enough to make people think I'm functioning, but mentally I'm lost. Anything I want to do is gone.

All the noises. Too many noises.

Clenching up. Don't want to hear it all.

Feel like I'm going to burst.

Want to just manage to do something effective. Why can't I be effective?

Bark bark bark bark

Even more. Why more?

Holding head. Typing. More headache.

Questions? I'm supposed to answer questions? Right, yes I can do that.

I'm going to just hide now. Maybe the noise will stop eventually.

Rock rock. rock rock

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.

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?

What do you get out of a diagnosis.

Well, I said I was starting this because of being tired of answering the same questions over and over. This is one of those questions, it was just asked again and I had to start going through the mental list rather than just linking to a post like my eventual response will be. Anyways for a list of things that I've gotten out of my diagnosis and others have mentioned getting out of their diagnoses.

The ability to work with specialists

This is in particular what caused me to get my diagnosis. Most counselors and people of that sort don't actually have knowledge about the autistic spectrum - and if they do, then it is often doesn't include actually working with people on the spectrum, just a researcher's view of it. While these people don't necessarily work with only people with diagnoses, its unusual for one of them to have the time in their schedule to take on undiagnosed patients.

Various sorts of therapy covered by insurance

A decent number of states at this point have laws regarding insurance and the autistic spectrum. These laws vary wildly from it not being able to be counted as a pre-existing condition, to requiring coverage of things that are not necessarily otherwise covered. In Massachusetts, ARICA is worth looking into. Speech therapy, occupational therapy, and the like are required to be covered by at least some sort of insurance. I've not taken advantage of this but have had it recommended to me that I should look into sensory integration occupational therapy.

Accommodations at work, in school, or in other relevant places

Accommodations are the standard thing that people get out of a diagnosis. These vary from having more time on exams, to taking exams separate from the class, to having all instructions written instead of given verbally. Personally, when I eventually retake the GRE subject test, I'm going to be needing to request a separate room with a non-smoking proctor, and the room not having florescent light bulbs. When it comes to work, I'm going to have a huge challenge finding the right accommodations to deal with my sensory needs (other than we've figured out I need a closet or something that's mine to hide in if I start getting a migraine from things getting to be too much).

Generic 'for disabled people' monetarily-based things from the government

These seemed just worth grouping together because they're all related. I get reduced fare public transit tickets because of my Asperger's (which is incredibly nice with the inability to drive and lack of income). It can be enough to qualify people for SSI and/or SSDI. With SSI you qualify for things like food stamps, Mass Health, and such without employment. In general, if someone need monetary assistance it'd be the huge pain that it is with the government, but its far more of an option than without a diagnosis.

Others understanding you better

This can actually be far more than people give it credit for. Assumptions that some of your actions aren't for other reasons going away can mean a lot.

A diagnostic report that helps you understand yourself better

When you get a diagnosis, you don't just get a paper with a label on it, you get a full report of the testing done. This is a description of some of your strengths and weaknesses, which you may have not known about before. This might be because of not having realized that people functioned any differently than you did. It wasn't until reading my diagnosis report that I realized that not everyone fully analyzed a situation before deciding whether something was "awkward" or such. The idea of intuitive understanding of social situations had never occured to me.

The diagnostic report also allows you to inform others about yourself

My doctor is interested in doing everything she can do to help me, but hasn't worked with another patient with an ASD before. She has a copy of my diagnostic report as well and is using that to help to understand me. The report is a formal way of giving her this information. It is also not me needing to explain details about myself that I have no idea how to put into words.

There may be more of these, and if I come up with more then I'll edit this, but this should at least be a useful list that I can link to.

What is Asperger's?

Asperger's Syndrome, like everything on the autistic spectrum, is incredibly hard to describe because it varies so widely between people. One of the more common lines I've seen is "If you've met one person with Asperger's Syndrome you've met one person with Asperger's Syndrome." However, there is still the possibility of a basic description.

Asperger's Syndrome is an autistic spectrum disorder (ASD) along with Autistic Disorder (also known as classic autism or Kanner's autism - classic autism being my preference but not the label in the diagnostic manuals), and PDD-NOS. Asperger's Syndrome is often thought of as "milder" or "higher functioning" than classic autism, though these words mean little and there is a wide range of severity of symptoms among people in all parts of the spectrum.

Specifically, Asperger's Syndrome is an ASD in which there is no delay in speech, self-help skills, or creativity about the environment.  It is specifically associated with the descriptions given by Hans Asperger, an austrian physician who described the similarity of traits between 4 patients of his in a 1944 paper. As his paper was not translated into English until 1989, and autism as a concept separate than schizophrenia was first made in 1943, Asperger's Syndrome is a relatively new diagnosis.

Possibly the best way to define what Asperger's Syndrome is by the set of various diagnostic criteria.

The current version of the DSM, the diagnostic standards manual which is how diagnoses are made in the US is the DSM-IV, which came out in 1994. It was the first diagnosis manual with a diagnosis for Asperger's.

DSM-IV diagnostic criteria for Asperger's Syndrome

1. Qualitative impairment in social interaction, as manifested by at least two of the following:
   
   
   1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
   2. failure to develop peer relationships appropriate to developmental level
   3. a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
   4. lack of social or emotional reciprocity
   
   
2. Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
   
   1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      
   2. apparently inflexible adherence to specific, nonfunctional routines or rituals
   3. stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
   4. persistent preoccupation with parts of objects
   
   
3. The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
4. There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
5. There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
   

Note that this specifically talks about what people see rather than what's going on.

Also meaningful is noting the additional criteria for classic autism as something like 80% of people with Asperger's technically meet the criteria.

Additional Criteria for Autistic Disorder

Qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

and
Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

1. social interaction
2. language as used in social communication
3. symbolic or imaginative play

However, other diagnostic criteria are likely far more useful. There is a new proposed version for the DSM-5 (which is coming out in 2013), in which the Asperger's diagnosis is merged in with classic autism and PDD-NOS into just "autistic spectrum disorder".

That diagnostic criteria is:

DSM-5 Proposed Diagnostic Criteria

1. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
   
   
   1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
      
   2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
      
   3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play; and in making friends; to an apparent absence of interest in people
      
2. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
   
   1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
      
   2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
      
   3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
      
   4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
      
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
   
4. Symptoms together limit and impair everyday functioning.
   

The most descriptive criteria, and closest to Asperger's writing, is however the Gillberg criteria, one which is rarely used but tends to be a very good description of Asperger's. This criteria is actually descriptive.

The Gillberg Criteria for Asperger's Syndrome

All of the following six criteria must be met for confirmation of diagnosis:

1. Severe impairment in reciprocal social interaction (at least two of the following)
   
   1. inability to interact with peers
      
   2. lack of desire to interact with peers
      
   3. lack of appreciation of social cues
      
   4. socially and emotionally inappropriate behavior
      
2. All-absorbing narrow interest (at least one of the following)
   1. exclusion of other activities
      
   2. repetitive adherence
      
   3. more rote than meaning
      
3. Imposition of routines and interests (at least one of the following)
   
   1. on self, in aspects of life
      
   2. on others
      
4. Speech and language problems (at least three of the following)
   
   1. delayed development
      
   2. superficially perfect expressive language
      
   3. formal, pedantic language
      
   4. odd prosody, peculiar voice characteristics
      
   5. impairment of comprehension including misinterpretations of literal/implied meanings
      
5. Non-verbal communication problems (at least one of the following)
   1. limited use of gestures
      
   2. clumsy/gauche body language
      
   3. limited facial expression
      
   4. inappropriate expression
      
   5. peculiar, stiff gaze
      
6. Motor clumsiness: poor performance on neurodevelopmental examination
   

I personally find this last criteria by far the most informative, and tend to use it to show people for what's different between just being "socially awkward" and Asperger's.

The thing that does need to be noted about all of these diagnostic criteria is that they're made for children. While plenty of of us still fully meet the criteria as adults, and in fact, if you don't meet the criteria you cannot be diagnosed even if you met it when you were younger, there will be changes between a child and an adult. Adults often have learned how to make eye contact (at least to some degree), have made progress on physical clumsiness, and have created large numbers of coping skills of various levels of effectiveness. This does not change that this is a description of that person, even when they are able to memorize a script of what is to be said in each situation and have learned that carrying certain items make drastic changes to their abilities.