Frustration

Right now I cannot find my wallet. It is here in the house somewhere. That much I know. But I have torn my room apart, created a whirlwind through my car, and gotten so angry that I started throwing things and screaming.

I made myself stop looking for the stupid thing. It feels like a fishhook in the back of my mind though and I want to start looking for it again. But I am still sweaty and shaky for my previous search. I do not handle frustration very well. I never have. When things do not go the way I want them to I seem to transform into a petulant child, insistent upon having my way come hell or high water. I have seen this behavior in autistic children whom I have worked with, in children and adults with ADHD, in people with no diagnosis at all, and every child I have ever met. With children with autism this behavior is sometimes refered to as ‘an autistic tantrum’.

But this is where I’d like to break things down a bit. Tantrum? If a favorite object or comfort item cannot be found an autistic child may very well have a meltdown. So might a child without autism. And why does this happen? The answer is simple. Fear.

When something that is usually very accessible in your environment is suddenly gone of course the response is fear. What is that item is gone forever? What if someone took it? Will it ever come back? Children, in general, thrive on consistency. They are too small to answer these questions themselves and are too small sometimes to understand that even if something is gone right now it may (and usually is) always found later.

Expectations are violated and no one likes that. Adults throw hissy fits in stores if the item they want isn’t there. They went to the store with the intent to buy this thing and now the thing is not available.  Expectation violated. Hopefully most adults can take this in stride and move on but having worked in retail before a large part of the adult population cannot. They scream at waiters, servers, register monkeys, and everyone they can trying to get their way. This behavior is unacceptable.

But here’s the dilly and the sweets. People with autism have, by the very definition of their diagnosis, dependence upon on sameness. I thrive on consistency. I hate and fear change. Why? Because expectations are violated. When the world around me does not act in the manner that I expect it to (my wallet being easy to find) I do not know what to do. The world suddenly makes no sense. Everything is wrong. Nothing is right. Anything could happen! If my wallet can disappear then the couch can spontaneously turn into spaghetti and my dog could teleport to a new family in Canada. (Country chosen at random, no hard feelings right Canada? You guys are so nice there.)

Now logically I know these things won’t happen. My wallet will turn up. I can ask for help looking for it. The world will not end. My dog will not teleport to Canada (if she did her new family would automatically love her cause she’s so cute). But when you depend on sameness to keep both our inner and outer world in check anything that rocks the boat is a horrifying reminder that anything could happen at anytime. The living room furniture being rearranged doesn’t really bother me. Its that things are different. Now the living room is no longer the living room. It is living room 2.0 and I will have to learn how to navigate it. I will bump into things. I will not like sitting someplace different because it changes how the TV sounds, if I get enough air from the air vents and fan to stay cool, where the dogs are going to chose to lay down. Integrating the new living room isn’t easy for me. I can and will do it. But I don’t and won’t like it.

And that is because I am afraid. I have a voice, the Imp maybe, yammering away in my head that this is bad, this is new, this isn’t what it used to be. It will never be the same, it will never be what it was, it will never be home. If the world outside me changes the world inside me is forced to change too. And the world inside me is very resistant. The world inside me that I have carefully built is what helps me navigate and understand the world outside of me.

The inner world of most people seems more resilient to change. But for those with autism even expected change is difficult, frightening, and exhausting. If we meltdown or breakdown because of this we are not petulant, we are not having a tantrum, we are not being willful.

We are scared. So very, very scared. Scared that the world will never be as it is. And exhausted all ready at the idea of learning this new world and making it a part of our inner world. I have the ability to express myself in words through both speaking and writing. I have an IQ that allows me to use logic to help me get past these moments. But right now I am still thinking about my wallet and I am still very angry at it for not being where it should be.

Side note: I found my wallet. I dropped it at the grocery store and a very nice person turned it in. Thank you nice person!

Being Diagnosed with Autism and Psychological Comorbidities

I thought I’d focus on my being diagnosed with autism and comorbid conditions. Comorbid conditions are common with a diagnosis of autism. Comorbidities are the simultaneous presence of two chronic diseases or conditions in a patient. There are many conditions that are commonly diagnosed with autism. I’ll focus on a few of my psychological comorbidities in this post.

As it got closer to my high school graduation I started to change in ways I didn’t understand. I started having trouble falling asleep at night because i was gripped by a paralyzing fear that something terrible was going to happen to my family. A break-in where the robbers were going to kill all the witnesses. My mom and my two sisters raped. My baby brothers tortured and mutilated. My brain told me that if I stayed awake this disaster scenario would be avoided. So I stayed awake. After awhile the solution to preventing my nightmare changed. If I checked all the windows during the daytime and then the doors three times at night everything would be okay. Eventually that fear changed too. The nightmare scenario no longer haunted me but leaving the house for any reason but going to school filled me with a deep dread. I stopped going over to my friend S’s house which was something I’d done nearly every day for almost two years. She would invite me but I wasn’t feeling well. Stomach pain, vomiting, and diarrhea (not new to me) happened with a new frequency. I couldn’t trust my body.

But that was okay. I didn’t feel like eating. All I really wanted to do was sleep. When I got up in the morning for school I would get dressed, put my hair up, and lay back down until my mom called for me to get in the car. I went to school and then back home. At home I laid down down on the closet floor in my room and just stayed there. Sometimes I slept, mostly I didn’t. I converted oxygen into carbon dioxide. My memories from that time period are very vague. I know a long time schoolmate told me that I had changed and wasn’t my usual self. I knew it to be true but didn’t really care.

Shortly before I graduated we moved from my childhood home. I began having these attacks of intense fear. I would feel overly hot, sweat, shake. My heart would race and race, hammering in my chest. I would struggle to breath, experience numbness and tingling in my extremities, and was convinced i could not survive this terror. That my hear would give out. Sometimes I would cry uncontrollably during these attacks. Sometimes I’d cry after and occasionally I wouldn’t cry at all. Usually I’d fall into a deep sleep when the storm had passed. I graduated high school but didn’t leave for college. I was too scared. Scared of new places and new people. Too scared to leave my family. I started at a local community college a year after I graduated from high school. Two years later I left for university.

I had always been an anxious kid. I “came from a family of worriers” I was often told. I was a “worry wart”. I thought too much, spent too much time inside my head. I needed to try harder to think positively.

Rubbish, bunk, and nonsense.

How were you supposed to get out of your head? How do you stop thinking? Try harder? I had to force myself to walk in a crowd, to get to a classroom. The courage it took to raise my hand to participate left me mentally and physically exhausted. How much harder could I try? I barely had anything left and still had to go to work. And while we’re at it, what did I have to be sad about? People have it much harder than me after all.

Cheer up, toughen up, think positively damn you!

I knew I had had a major depressive episode. I knew I had an anxiety disorder. But my family and my culture see mental illness in black and white. You are either crazy or you aren’t trying hard enough. You’re wallowing. You’re feeling sorry for yourself. You aren’t trying hard enough!

My depression returned my first lonely semester at university. But thing were different now. The student health center was across the street from my dorm building and the counseling center a short walk away. After several days of interviews and testing I was diagnosed with Asperger’s Syndrome, panic disorder with agoraphobia, major depressive disorder, generalized anxiety disorder, and a math learning disorder (more on that one later).

I met the majority of diagnostic criteria for Asperger’s Syndrome. I display a marked impairment in facial expressions and in maintaining proper nonverbal behaviors. I fail to develop appropriate peer relationships and lack social and emotional reciprocity. I adhere to inflexible schedules of specific, nonfunctional routines. I have an intense need for sameness and consistency. I have several repetitive mannerisms, such as rocking when seated and standing. My developmental history clearly showed restricted social and emotional abilities, inadequate communication skills, uneven cognitive abilities, and an excessive and/or abnormal on special interests. My rate and tone of speech are often flat. I avoid making eye contact. I often display a significant lack of affect.

Autism all around, that’s me.

And-INTRO-

I am an autistic adult. I was diagnosed with autism ten years ago while I was an undergraduate student. I’ve worked with many children with autism since I was diagnosed but the only autistic adults I know of are those who have written books. I know no adults with autism personally. I used to work for a company that provides ABA therapy for children with autism but no one there had met or worked with an autistic adult. This became clear to me very quickly. They had no idea how to accommodate my disabilities and had no mental framework for how an adult with autism functions. While I worked for them I came to realize in a very acute manner that no one has any idea what to do with autistic adults who can generally get along in the world with enough success to not be noticed as they struggle.

It seems that autism ends when a child with a nominal IQ and sufficient self care skills leaves the public education system. But that’s  not true for the parents or the individuals with autism. I can’t offer any impressions as a parent as I do not have (and will never have) children. I can speak for my own experience. There are commonalities with the experiences of other adults with autism but everyone’s autism is unique. What I relate isn’t gospel or evidence based. Its just my anecdotal experiences. I may not have been diagnosed until I was in my twenties but I knew something was very wrong with me as early as six years old. I was different in some way I couldn’t pinpoint and no one else seemed to know what it was either.

I was fortunate to go to a university that offered great psychological services for students. I’m even more fortunate to have a long time friend (one of very few) who helped and continues to help me understand myself and how to function in this world that is not built for me. I’m fortunate that medications help with some of my comorbid conditions. What I hope for from this blog is to help people realize that while I am out in the world I am very much apart from it. I hope that the world comes to know the struggles of adults with autism. I hope both sides can come together so that as a new generation of children with autism become adults their struggles can be understood and hopefully remediated.

That’s all for now. More to come soon.