an autism blog by an autistic woman

Changes and stress

changes and stress

All of the recent change and stress in my life is really messing up my head. The little bit I sleep, I wake up startled and thinking I hear my mom screaming for me. I wake up not knowing what day it is and thinking we are late for a dr appointment. I wake up not knowing what’s real and what isn’t.

I used to lay in bed for a little while once I woke up to process things. I can’t do that anymore.

There’s no time to process anything because there’s too much to do. Everything is an emergency. Everything is life or death and doing the wrong thing could mean disaster.

People mean well when they say things like take time for yourself and get some rest, but those things are not possible when you are there alone having to deal with it all. There is no time for yourself and no rest.

And then there are the people who want to tell me they know exactly what I’m going through, or they have some bright idea about how to solve the problem. I’m normally pretty tolerant of this type of thing but not anymore. I’m too tired and too stressed and don’t have the energy to be polite to people who have no clue.

I’m tired. I’m crabby. I’m a raw open nerve of don’t you dare try to touch me.

And I know that today is as good as it will get. Tomorrow will be a little bit worse. In the future I will look back on this as one of the better days.

I write here not because I’m looking for advice but because it’s the only place I can express my feelings.

Thanks to my friends for listening xo

Everything changed overnight

good as it gets quote

My mom and I were talking yesterday about how hard all this is for both of us. Aside from the fact she could die at any time, the biggest deal seems to be that everything changed overnight.

The best case scenario now is that she lives with me forever and three times per week we go to get platelet transfusions and once a week go to the oncologist etc.

Once a day I bathe her and help her stand so she doesn’t fall again while she’s trying to put on her underwear because her blood doesn’t clot anymore. We buy a lot of diapers now. We weigh every morning and see she lost a few more pounds and wonder how that is possible. Then laugh because the coffee table looks like a science experiment gone wrong.

It takes her two hours per day to count out her morning and evening meds and it takes me 20 minutes to recount them to make sure she did it right. I have to shoot my mom with two kinds of insulin now because her diabetes pills don’t work with her chemo drugs. We have to make sure everything she eats is bacteria free as well as won’t raise her blood sugar or blood pressure. We have to make sure the PICC line is tucked in and covered properly so she doesn’t accidentally pull it out at night and die. I have nightmares about that.

At night we say “Goodnight I hope you get some sleep and don’t have to get up later to call an ambulance.”

This is the new routine.

This is the best case scenario routine.

Once she can no longer tolerate this chemo pill, she will die without a stem cell donor. This is our reality now. Hospital socks so she doesn’t slip on the floor. Trying to find the least bruised place to inject insulin. Listening to her cough and gasp for air because that’s one of the better side effects.

Having well meaning family members and her friends say she should just go ahead and die. Explaining to them for the fifth time that no she really can’t have flowers, because the dr said mold could kill her, and trying to care about their hurt feelings. Because it’s a struggle to fit caring about anything else into the new routine.

Before May 4, everything was fine. Now I just try not to cry because she’s home and if I cry she cries, and when she cries she can’t breathe. Now I stay awake at night wondering how long we will be able to afford this best case scenario and wishing my mom had gotten a better daughter. So for the people who asked, this is how we are doing.

Graduating from College

I did it! I finally graduated from college.


I went through an online program, and I had the option to attend graduation in person but did not for a few reasons. The number one reason being that I didn’t think I could handle the ceremony with my anxiety. But also, I couldn’t afford to travel to San Diego.

As it turned out, my mom ended up being diagnosed with acute leukemia and I was going back and forth to the hospital constantly during the time of the graduation ceremony. Ultimately I wouldn’t have been able to go to graduation anyway.

So I got my diploma in the mail. I received it on one of the many days during which I had spent most of the day crying. I could tell by the envelope what was inside. I left it sitting unopened on the kitchen table, because my mom was in the hospital. I didn’t know if she would live long enough to get to come home and see it. I just couldn’t bring myself to open it without her.

For four years, I had looked forward to receiving my diploma. I had looked forward to this day, and so had my mom. It had never occurred to me that my mom wouldn’t be around to see this moment.

So for two weeks the diploma sat on the kitchen table, the envelope unopened.

Then my mom came home.

We opened it together.

She said she was glad she lived long enough to see this day. She said she was proud of me.

She asked why I didn’t seem happy about it. I just couldn’t be happy.

Suddenly the hard work of the past four years to graduate school seems meaningless. All of the stress I went through with school, all that stress that I thought would be over once I graduated, seems so small and insignificant compared to the stress of our life now.

All I want now is for my mom to live. But at least she got to see my diploma.

Thank You

thank you

Thank you to everyone who has helped my mom so far. We appreciate every single person who has helped, and it means so much to me that people who don’t even know us have donated. I also appreciate all the prayers and good thoughts for my mom.

My mom is home with me now. Thanks to the generosity of all of you we have been able to arrange for transportation to most of her appointments for the next few weeks.

Please continue to pray. And please share this if you can. Thank you all again.

Life is too short

life is too short

Just a quick update. I am struggling. My mom has been diagnosed with acute leukemia so I would appreciate any prayers, good thoughts, etc for her. She is not doing well and it is pretty much killing me.

One thing my mom’s cancer is teaching me is that so many things don’t really matter at all. So many things I used to spend my time worrying about, I don’t care about at all anymore. Life is way too short.

I have created a GoFundMe to help with medical expenses which, unfortunately, have quickly depleted all the money we have. If you are interested in helping us out, here is the link:

Update: Thank you so much for everyone who has helped us. We appreciate it more than words can possibly say.

In honor of autism awareness / autism acceptance month…

Here is my “autism awareness” outfit. No not really. But kind of.

my outfit

It isn’t blue or red or gold or rainbow, and it doesn’t have a puzzle piece or whatever it is we are supposed to have instead. It’s just the clothes I have been wearing for more than a week. Because I’m tired. I don’t feel like changing clothes. I am comfortable in these. I don’t care if they haven’t been washed. I have been using what little energy I have to do other things. Because that is my life sometimes, most of the time.

Other than to go outside to feed a sick squirrel, I have not left home since my last doctor appointment. I can’t remember when that was but there was snow. This is life and it is autism and it is other things, but it’s the truth because it’s my reality. It’s where I’m at right now. Now you’re aware.

I have seen so much drama in the online autism community about awareness and acceptance and everything I should be doing and not doing this month that I feel like leaving Facebook until it’s over. I have watched other autistic people be bashed about their word choices or profile pictures, or get so stressed about Autism Acceptance Month that they have taken a FB break…a break from the only place they previously felt accepted, a place where they had friends. That’s what is happening.

I am sad right now. I personally am numb to whether people accept me as a person or not. However it would be nice to see real acceptance, for actual autistic people of all ages. I have seen some posts offering ways to offer real help instead of “lighting up” profiles or being a “slacktivist”.

My suggestion to any non-autistic person is to try to see things from our point of view even just for one day. For many of us, we spend our whole lives being forced to try to fit into yours, and then being punished in various ways for not being able to do it your way. So maybe think of it like this. If you are right handed, every time you go to write something try to write with your left foot instead. And if you can’t do it, know you will be punished and ridiculed and that society will want to dedicate resources to trying to cure you or prevent you. Because everyone but you writes with their left feet. You’re the one in 60-whatever it is now. Sure your parents love you (if you’re lucky). But If you want to survive and be independent in this world, you will have to learn to be left-footed. Now imagine that your whole life revolves around being forced to learn to write with your left foot. Maybe you make some progress and people blog about how cute and inspirational you are. And maybe others want to raise awareness to prevent this whole hand-writing thing. Maybe your parents blog about how much of a burden you are when your inability to be left-footed keeps them awake all night and deprives them of a normal life, because they’re tired and need to vent… and maybe you grow up bullied and finally become a little independent but you can’t find work because everyone knows you aren’t naturally left-footed. But you try your best and just hope to survive some days. And you long for a world where people could just let you be yourself, because you don’t know how to be anyone else and you are tired. So tired that you can’t even communicate. And then people get mad at you for not using your words. That’s what life is like for many autistic people I know including myself, except it is worse in so many ways than will fit into this analogy.

I know it’s impossible to really walk in someone else’s shoes. But maybe just remember that we have shoes.

I am so grateful for the friends I have made through this page. It is sometimes the closest thing to acceptance that I have. If you are one of the people who I have seen posting about how you wish you could make a real difference for autism beyond awareness, I encourage you to get to know autistic people even if it is just through social media. Befriend them or even just listen to them and don’t assume you know more about their lives than they do. Or if you have kids teach your children respect by respecting them as people and encouraging them to accept other people as different than them but not less than them.

I hope there comes a time when we no longer have to dedicate a day or a month to raising awareness or acceptance for why we should be treating each other like human beings.

When you say you appreciate my positive attitude…

Image is a photograph of tiny purple flowers growing through cracked blacktop with the words "I'm not trying to inspire you. I'm just trying to survive."

Image is a photograph of tiny purple flowers growing through cracked blacktop with the words “I’m not trying to inspire you. I’m just trying to survive.”

You might have noticed that I haven’t blogged for a while, and that I haven’t been updating the Aspified facebook page as often as I used to. I’ve been going through another burnout as a result of extreme stress and having to spend so much time blending in and passing. In addition to other stressful life events, I have been trying to complete my last semester of college.

The more burned out I’ve become, the less tolerance I have had for people’s attitudes. Specifically, I am struggling with people who say things like “You’re such an inspiration” or “I appreciate your positive attitude.”

If you’re looking at the situation from the outside in, you might think these phrases are compliments. Sometimes they are.  But within the context I am hearing them, there is a more accurate translation.

What these people are really saying to me is “Rather than listen to the struggles you have told me you are having in this class and finding some way to follow the law and accommodate you, or even acknowledge your documented disabilities, I will instead focus on how awesome you are handling the fact that we are discriminating against you and causing you undue stress.”

I try to have a positive attitude about most things, because I don’t like feeling negatively. I don’t like to wallow in my troubles, because it makes me feel worse. That is my personal choice, and it is a choice I make for myself. Not for you.

When you tell me you appreciate my positive attitude, the message I receive is that I owe you something. Your actions after speaking these words to me, or rather your inaction to do anything to actually solve the problem, demonstrate to me that you do not care that I am struggling. I’m sure it’s much easier to say how inspiring I am for overcoming my “challenges” (as you call them), but here’s the thing.

I do not owe you a positive attitude.

I am not here to inspire you.

I am just trying to survive in a world that is set up to exclude me.

I do not need your false-praise or even your genuine compliment.

What I need is for you to do your job, comply with the law, and get me closed captions or a transcript for this project. What I need is to not be told “I know you have trouble hearing, but I would really like to discuss this over the phone,” when I have told you five times that I can’t do that. If I could hear well enough to discuss this over the phone, we would not be having this conversation.

What I need is for you to answer my question, in writing.

What I need is for you to explain the instructions in a way I can understand them.

What I need is to stop having to accommodate the needs of the people who are required by law to accommodate mine. Otherwise, the “inspiring” student with “such a positive attitude” will be filing a lawsuit.

Edit to add: For non-disabled people who feel the need to comment here about how easy it would be for me to find an advocate to fight this on my behalf, or how easily you would solve this problem if you were me, please do me a favor and shut up. If those are your thoughts, then you have no idea what the real world is like for disabled people, and your attitude is part of the problem.


With every autistic death, I have more fear

Image is a black and white drawing of a young person wearing a cape and running from his winged reflection.

I’m autistic. I live in a world where I have to be fearful. Because people don’t understand autism. Because people think disabled people should not have the right to live. Because people prefer to judge and fear that which they do not understand.

I wake up every day and fear that I will have a meltdown, that this meltdown will be the one that gets me killed one way or another.

I fear that the next meltdown will be the one in which I accidentally injure myself beyond repair. Or take my own life. Or appear to others to be wanting to take my own life.

I fear that I will scream too loud, and someone will call the police on me out of concern. I fear being confronted, cornered, touched, or restrained by police. Police that I didn’t want here. Who I didn’t call for help. Because I know that during a meltdown I do not have the ability to make a logical choice. I know I will end up dead. And my loved ones will be left behind to suffer.

I can’t imagine my mother having to go through the pain of losing her daughter, and on top of that having to be confronted with the media and an ignorant public who thinks I deserved to die. People who didn’t know me, who didn’t know the whole story. People who don’t understand autism, or – even worse – people who do. People who have their own autistic child and yet somehow think I deserved to die anyway.

I don’t want to be remembered for my worst moment. I don’t want to be remembered as the hero or the villain of what others will inevitably see as my tragic story. I don’t want my death to serve as a teaching moment for others, or as a wake up call, or as a platform for people to climb onto and argue with each other about how much autistic people deserve to live or die. I just want to live my life in peace.

But I am afraid. The world has taught me that I have to be. And with every autistic death, I have more fear. That next time it will be me, or my niece, or my best friend’s son, or one of you, or one of your kids.

I know that I am not alone in this fear.

Instead of arguing, what can we do about it?

Why am I so angry?

Image is a woman punching a man. Text says "Why am I so angry?" "You keep punching me!"

Image is a woman punching a man. Text says “Why am I so angry?” “You keep punching me!”

Basically a regular scenario:

Someone says something.

I respond to the words they said.

They say that’s not what they meant.

Ok, but that’s what they said.

They express that obviously I am the idiot because I could not read their mind to know that instead of what they said, they meant something else.

“Ok so could you please say what you actually meant? Because I’m not psychic.”

“God, Amy, why do you have to make things so difficult?”

Then I become frustrated and give up. No matter what they meant, I don’t care anymore. If they wanted me to understand what the hell they wanted to say, they could have actually said it rather than playing mind games.

“Why are you so angry, Amy?!?!”

Why am I so angry?

Because although I try to patiently deal with this kind of nonsense everyday, no one should have to. I don’t have the energy for it.

Because despite evidence to the contrary, I am the one labeled with communication problems. I am the one labeled with being unable to socialize.

Do I lack empathy for ableist stupidity? Damn straight. I also lack patience for people who make things difficult for me, the disabled person, and then blame me and accuse me of being difficult.

People wonder why I prefer to be alone, to not deal with people. This is why. It’s exhausting, enraging, and ultimately a lot less fun than any of my hobbies.

Functioning and Communicating

Just because I can talk doesnt mean I can always communicate

Just because I can talk doesnt mean I can always communicate

I would like to talk about functioning and communicating.

People think that because I can talk and am labeled as higher functioning than, say, their nonverbal child who was diagnosed with “classic” autism, that I can always communicate and do it well.

Don’t get me wrong, I am happy I can talk and that I’ve learned sign language. I’m happy I can read and write and generally communicate well in writing.

But there are still times I struggle very hard to communicate because I can’t process information in a typical way. For example:

– If I’m in pain I can’t tell you what hurts. The pain interferes with my ability to process this information and communicate it. If you press me for information while I’m in pain, such as at the doctor office or hospital, I will become very frustrated and may melt down or hurt myself. I’m not trying to be difficult.

– If I am having a meltdown I cannot communicate. If you are there and you try to reason with me, yell at me, get near me, or touch me, I may hurt myself or you. My way of communicating this at the time is to scream at the top of my lungs or to injure myself. It’s like the logical part of my brain breaks down and I don’t even feel human while this is happening.

– If I am in a face to face interaction with you outside of my home, where there are overwhelming things like background noise or people moving around, I may shut down and not be able to communicate with you. At first I am distracted, and then I am frustrated by the distraction, and then I am reciting lines from movies in my head while biding my time until the conversation is over. At this point I may either be rambling about something that makes no sense to you or I may be completely silent.

– If I am in an otherwise stressful situation, or I am tired, or you have changed your haircut, or I can’t remember your name, or I am preoccupied thinking about the time my pet lizard died when I was 6, or I am hungry for french fries but not the kind this restaurant sells, I may not be able to communicate with you. I may have some words but they may not be the ones you want to hear.

These are just a few examples.

That is me. I’m not saying this is all autistic people.

The Internet can be deceiving I think. I probably seem like a totally functioning and awesome communicator if you read me online. But you are mostly only seeing me in writing. You are seeing the words I have thought about during times when I have the ability and energy. Maybe I’ve edited my comment 10 times, or changed it around in my head for a week. Other times I surprise myself and the words come easily. Sometimes I still don’t say what I mean, even on a good day. If you met me in person and tried to carry on a face to face conversation I’m not sure if you would recognize me.

This is me. I’m not saying this is all autistic people.

I’m writing this for a few reasons and none of them is for pity. One is so people can get to know me better. Another is so that anyone else who is like me who may think they’re alone will know it isn’t only them. But also it’s for parents, because I see so many with nonverbal kids who say they wish their kids could tell them where it hurts etc, and I understand where you’re coming from but I also know I think to myself that even if your child could talk he might still be like me.

I don’t think all people know that sometimes autistic people who are verbal can’t communicate these things either. Sometimes the kid who can use a device to communicate or who signs etc can’t communicate during a difficult time, and I see it. I see myself in that kid. I see my own autism in that kid. I see the parent who tries so hard get upset and the child who also tries so hard get more frustrated, and sometimes someone gets hurt. So I just wanted to give my perspective and hope maybe it helps someone to better understand.

This was very difficult for me to write. But I hope that in some small way it helps someone.

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