“14 Things I Hate About Being Autistic”


My Favorite:

6: It is usually assumed that I have “conquered” or “defeated” autism, and that anything I have achieved is in spite of autism. A phrase I hear a lot is “I would never have known that you were autistic”, as though autism is this hugely negative and obvious thing that a non-expert would be able to pick in a second. (Or, as though society is made up entirely of autism experts). This is well-intentioned but problematic because it carries the underlying assumption that if I have done something considered as “successful”, then this must have been despite my autism. In reality, autism is a part of everything that I do. Autism is not an enemy that needs to be defeated. My autism hasn’t been “overcome”. This issue is also symptomatic of the wider ignorance as to how autism presents – in reality, most of us would not be able to pick an autistic person out of a crowd. 

Dear Doctor…

Do not go where the path may lead, go instead where there is no path and leave a trail.~ Ralph Waldo Emerson



Dear Doctor,

I really wish you could understand that the human body is an ecosystem. Everything that happens affects every part of the human body. It’s not as simple as fix this and everything will be fine. Your fixes have frequently created more problems in my ecosystem. And, by the way, each ecosystem is unique and responds differently than any other ecosystem out there.

If only you could pull all the information I have about my ecosystem into your head and see what my life really looks like. Maybe you would stop guessing so much. Perhaps you could admit that you don’t understand and need to study things some more. On a shooting star, I wish you’d stop telling me that all my problems are psychosomatic. I have consented to your tests, hospital stays, blood draws and office visits so you could have data you knew how to quantify and draw conclusions from. Now all I want is for you to follow through and do your job.

That’s right. Do. Your. Job. Use your powers of inquiry that got you into your chosen profession. Stop limiting yourself to the narrow box that has come to define your idea of disease. It’s rumored that we use less than 20% of our brain’s capacity. Imagine what you could do by committing even 1% more to solving the mysteries of my life.

Stop complaining about me wanting answers. Stop denying me basic medical care because you don’t believe I have any illnesses. Stop reading just one line of my chart and spend a few minutes seeing where I’ve been to help me get to where I’m going. Stop treating me like I’m an idiot and have no idea. Stop trying to use terminology you think I won’t understand in an effort to “satisfy” my line of questioning. Just STOP.

Before you start griping about me, think about how you would feel being on the receiving end of your statements. Think about what it’s like to be told you are purposefully making yourself sick. Think about the impact your words will have on me. I came to you because I wanted help and hopefully answers. Not because my self-esteem needed another hit.

Act. Tell me your theories. Give me space to tell you my experience, which may answer more questions that you have. Apply your knowledge and realize that my ecosystem is rather precariously balanced. Don’t just toss out random lines of thought. Do your research and be ready to DISCUSS, not tell, the information. You see, I’m not quite the idiot you make me out to be. Maybe that’s what knocked you off course and made you think it’s all in my head. Just a hint…while I may not have a medical degree, I’ve been sick long enough to know my own symptoms AND to recognize where you are blowing smoke up an orifice.

The Patient You Blew Off Today

Woof, Woof

The dogs with the loudest bark are the ones that are most afraid.~Norman Reedus

Most people who really know me would tell you I’m a logical, methodical thinker. I’ve been this way for as long as I can remember. I look at situations from many different perspectives, analyze the information and choose a path that leads to the desired conclusion. To some, this comes across as manipulative or scheming. To others, it seems to be a knack for predicting outcomes. I found out tonight that to yet others, I appear defensive.

Oh yes. I was drawn into a service dog drama. For those not familiar with these incidents, they occur when one person feels they have the “right” perspective on something related to service dogs. Much like any discussion on a topic people are passionate about, there are always opposing views. I don’t think it’s unique to discussions about service dogs yet it seems that there is more baiting and needling within this community.

I’m sure many of you are familiar with the “lies, damn lies, and statistics” methodology. In short, the more “facts” you can throw out, the more convincing you appear. The problem is, anyone can find “facts” to back up their position. Information flows freely through the Internet and you can find other people who perceive things the same way you do with just a few keystrokes. Just because you have more “facts” in your argument does not make your argument more valid.

In my experience the harder you push for your “facts” to be believed by others, the more you have to hide. It’s one thing to take a stand and state your beliefs. It is an entirely different thing to intentionally mislead and knowingly agitate people just for fun. In my book, that just makes you a bully.

So read the quote above. Think about the people who push “facts” at you and remember that a loud bark does not necessarily indicate confidence. Sometimes it’s just a distraction to keep you from pursuing independent thought.


Domestic terrorism?

Yesterday, I was discriminated against because of one of my disabilities. The acts of one individual and by extension, one agency, caused me to seriously think about the state of our rights here in America. What happened yesterday amounted to a unautorized search under Constitutional law. But, because it was conducted under the auspices of “security,” it was perfectly legal.

I watched literally hundreds of people shuffle through the TSA checkpoint yesterday. No questions asked, they just shuffled along dropping their clothes and shoes into bins to be x-rayed. They consented to pat downs and partial strip searches because TSA asked them to comply. Americans are so accustomed to the invasive practices of TSA that they don’t even question the legality of what’s happening in the name of security.

I for one am outraged. There was no justification for what happened to me yesterday. I requested that a vial of insulin not be x-rayed as that process ionizes the medication and renders it useless. The TSA agent told me I was the first person to request this. The TSA then proceeds to rifle through my belongings. I was threatened with security and being removed from the airport at least six times.

In an attempt to figure out what had triggered this event, I asked the agent in charge why she insisted on a full search procedure. I was told it was because their policy dictated it. I also learned she felt that working for TSA for 8 years and having a degree in Criminal Justice made her somehow better than me. Her chiding tone confirmed that she no longer saw me as an American citizen just trying to get home. No, I was an inconvenience to be handled.

The agent insisted she was just keeping everyone safe. I, for one, did not feel safe. Honestly, I don’t feel any safer under TSA than I did 13 years ago. This agent threatened to force me out of the airport with no recourse. It was truly comply or else. I asked how she was making things safe and was told she didn’t need to explain herself. TSA has become an agency that answers to no one. They hide behind policy and procedure. There is no accountability. There is almost no respect for the people they are supposedly helping to feel safe.

Since the TSA has failed to do anything in the way of preventing terrorism, what is their true mission? They came claim that by their existence, they are a deterrent. Yet, aside from confiscating millions of gallons of wine, water and baby formula there is nothing to show for their efforts. Tons of metal products including scissors, knitting needles and pocket knives have been seized under the guise of protecting the public. Millions of people have been harassed, assaulted, ejected and threatened under the guise of keeping the traveling public safe. Enough is enough.

Looking in from my place, the agency is nothing but a group of domestic terrorists. They have implemented policy that discriminates and degrades to the point of instilling fear. That is terrorism.

It’s time to realize that bit by bit we have lost our Constitutionally guaranteed rights. I’m not talking the big, controversial rights. It’s the little drops of water that have worn away the touchstone of democracy. It’s the quiet stealth of the government peering into the windows of our lives. If you’re okay with peeping toms, than you should be comfortable with the way our government has snuck into every corner. I’m not okay with peeping toms. I’m standing at this point and loudly declaring that enough is enough.

#TSA  #standupnow


Earlier this week, I was asked why I advocate. The discussion was both about my own advocacy in pursuit of healthcare and the advocacy I do for people affected by disabilities. As I tried to explain that being a “sheeple” was not in my nature, the following two pieces came to mind.

“Once, on ancient Earth, there was a human boy walking along a beach. There had just been a storm, and starfish had been scattered along the sands. The boy knew the fish would die, so he began to fling the fish to the sea. But every time he threw a starfish, another would wash ashore. “An old Earth man happened along and saw what the child was doing. He called out, ‘Boy, what are you doing?’ ” ‘Saving the starfish!’ replied the boy. ” ‘But your attempts are useless, child! Every time you save one, another one returns, often the same one! You can’t save them all, so why bother trying? Why does it matter, anyway?’ called the old man. “The boy thought about this for a while, a starfish in his hand; he answered, “Well, it matters to this one.” And then he flung the starfish into the welcoming sea.”
― Loren Eiseley, The Star Thrower

This reflects my own struggle to get doctors and healthcare professionals to understand that I am deserving of their time. I have recently been feeling that my health is only a priority to me. My last set of physicians dismissed me while I was medically unstable because I “used too many resources.” Fortunately, I believe I am now with a group that is interested in my care. The last two weeks, I been able to establish care with providers who have taken the time to hear my story. They have not dismissed my illnesses as psychosomatic. I am now receiving the care that should have been happening for the last two years.

“First they came for the communists, and I did not speak out—
because I was not a communist;
Then they came for the socialists, and I did not speak out—
because I was not a socialist;
Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;
Then they came for the Jews, and I did not speak out—
because I was not a Jew;
Then they came for me—
and there was no one left to speak out for me.”

― Martin Niemöller

I have considered this piece as one of the most important lessons that came out of World War II and the Holocaust. It projects the effects of apathy on the human race. For me, it gives the impetus to advocate for those whose voices may not be strong.

Both pieces highlight the importance of doing something…whether for yourself or someone else. When you turn away from others, you are denying yourself the opportunity to lift someone else up. And there is really nothing quite like the feeling of making a difference.