If you’re autistic and we’re diagnosed late in life like I was, you may also have heard the phrase “Autism Speaks is trash”. In fact it is a password for one of my Facebook groups. For many autistic adults, Autism Speaks is a curse word, and a trigger. But why? Why is this organization that sounds like it is supposed to be helping those with autism considered to be such a bad thing within the very community it supports? I thought the same thing. I went along with what others said at first. Not wanting to offend my fellow autists, I typed the password without a second thought. But today I became curious. I did some digging on their website. If you know anything about autism, you should at least know these key facts: Autism is a lifelong condition. There is no cure and no solid treatment. Autistic children will always be autistic adults. Autism is not an excuse to be weird, nor is it anyone who is shy. It is a difficulty understanding and processing social interaction often but not always coupled by various other disorders. Autism is a spectrum, meaning no two people with autism are the same. There are a few things that are autism and the rest is the person affected. By that I mean how the person is affected by autism in their own individual way. Autism Speaks doesn’t quite understand these facts. They claim to be searching for a cure. If you haven’t heard, Autism is also called neurodiversity, or different brain. How do you expect to cure someone who has a different brain? Furthermore why would you? The organization also claims that children can “grow out of” autism and become normal. It has never been proven that anyone can grow out of being autistic. Autism speaks doesn’t provide any help for adults with autism. I’ve read they only use 4% of their profits to aid families of children with autism. No one with autism even makes any of their decisions. As an autistic person, I speak for myself, and myself can’t believe the crap and misinformation that this company is spreading. It’s almost as bad as the whole Jenny McCarthy fiasco. Please, think twice before throwing money at Autism Speaks, just because they have autism in their name. There are many other organizations for autistic people and their families who don’t act like autism is a plague that needs to be eradicated.
These can get you started in the right direction.
Autism. I have a diagnosis from a psychiatrist. I still don’t know what that means for my day to day life. I need help. Specifically, I shutdown. I stop moving and thinking and I stare off while my mind catches up with reality. Often, though, I am interrupted before I can recover. My son cries and I have to care for him. My husband tries to snap me back because I’m not allowed to shutdown without telling him. I’m losing my grip. I’m spinning faster and faster and I’m going to collapse. I’m terrified that some day soon I will collapse literally into a full blown shutdown. Ian won’t know what to do. He will probably call 911. I will be touched by people I don’t know and then go into a meltdown. They will see this as a psychotic episode and restrain me. They may drug me. What am I supposed to do? I can’t handle more trauma. I don’t want to be admitted because I don’t know how to speak up for myself. I need to have a talk with Ian so I can warn him. I don’t want to be touched by strangers or drugged or thrown into a mental hospital. I’m taking my meds again. I have to keep taking them. I’m so scared. I don’t know how to avoid this. I can only hope to communicate effectively with Ian.
I signed up for classes on Monday. I have to meet with financial aid in about a week. I have to meet with the disability coordinator to set up my accommodations. All the while I feel this looming darkness over the whole situation. Thoughts of failure play over my thoughts like an intercom at an airport. I can’t quite make out the words but the feeling makes me anxious. I worry that I will repeat my past mistakes and lose any chance at a decent career. My therapist is very proud of me but I’m very scared. What if I can’t handle it but I’m too afraid to drop out? What if I lose focus and ruin my chances for a degree? I guess I’ll have to wait and see.
The worst thing about panicking on a fairly regular basis is when you get sleepy. Your mind and body are on high alert, tensing and racing respectively, while being too exhausted to do anything. That feeling when you have to run or find somewhere to hide, or even brace for impact, but you just can’t make your body move. Your mind can’t form a plan to avoid whatever nonsense triggered the panic. So you sit, eyes as open as you can hold them, body tending and relaxing as your muscles give in to the fear and exhaustion. Thoughts racing through your head ranging from a full picture of the thing feared happening on repeat, to the fact that this is just a panic attack and you will probably be ok, and finally the thought of just falling asleep and giving in to everything. Desperation has no better definition than the feeling of a sleepy panic. On paper it doesn’t sound that bad. Sleepy panic almost sounds like a comedy skit. Living it is the exact opposite. If you’ve ever been sleep deprived, you know how desperate you can get to just sleep. Throw in a panic where all you want is not to feel so terrified and you get this mangled monster taunting you to stay awake or else you’ll die a slow and painful death while also telling you that sleep is inevitable and you should just let sleep be the anesthesia to the pain you know you will receive from the panic. The only saving grace is that eventually you will come down from the panic attack and sleep, too exhausted to comfort yourself. That’s when the nightmares happen. Those horrific visions that danced in your head while you panicked become all too real in your subconscious and wake you from that much needed rest. Then it begins again.
Many people I assume start their first job and begin to feel independent. I imagined a sense of sustainability when I got my first job, but to my dismay, it felt more like a test in a subject I’d never studied. I thought that might be because I waited to get a job until after high school and my first child. Then my second job was surely supposed to give me that independent feeling. Being in an abusive relationship at the time prevented that. All the money I earned went to my ex. The third job has to be the charm then, but still no good feeling. I enjoyed my earnings but still relied heavily on my mother. This pattern continued even after I moved in with my parents and then to Nebraska with my husband. I chalked it up to being autistic, but never knew why or what to call it. I couldn’t figure out how to communicate that I was always afraid of doing my job wrong and losing it. I had never been fired for doing things wrong. But I just knew that if I couldn’t get it right I would be in trouble.
After watching a series on YouTube called “Ask an Autistic” I finally watched an episode where the speaker, Amethyst, explains in her words what autism is. When she began stated how autism is a disability, she said “impairments in executive functioning “. Impairment in executive functioning. That sounded right. She goes on to explain that executive functioning is the ability to start a task, continue the same task, keeping all the steps in order, and follow through completing the task. This is what I’ve been struggling with!! This is why I never finished school projects or felt like I was doing my job well. This is why I have such a hard time learning new jobs!
Hearing this description filled me with relief. With my assessment coming up, I stress every day and night about how I’m going to express my disability to someone I’ve never met. And now I have the words. Still freaked but a little less now.
The #metoo trend going around has me thinking a lot about my experiences and how much I’ve changed. I was raised in a world where sex means everything. I don’t even remember the first time I learned that all boys want is sex. I can’t recall when I was first told that if I don’t have sex with a partner he won’t stay with me or he will cheat on me. I also don’t know how I came to think not having sex meant I deserved to be with a cheater. But I was dating a man who had sex with me every single day of our relationship and he still slept with other women and girls in the same day. I was so confused about what I was doing wrong to deserve a cheater like him. And I continued to feel this way after he was no longer a part of my life.
Then I met Ian. We started off as friends but even then I felt drawn to him and compelled to give up sex early in our romantic relationship. We crashed through our relationship, getting married, pregnant, and then moving pretty far from our family. With the baby keeping us up all night and my body taking its time to recover, I have been eating myself alive in my head for not giving my husband what society tells me he needs. But even though we don’t get physical every night, he still wakes up to me every morning reminding me how much he loves us. Ian has given me what I wanted from the start, a relationship that doesn’t depend on sex. When I realized I could be comfortable with him, not apologizing for being tired or for feeling bad, nor did I have to do anything I didn’t want to just to please him. This was the door to the room I shut myself in so long ago trying to conform to what I thought was expected of me. My husband gave me the best gift I could ever receive. The freedom to love him in my own way.
I had a dream I’ve had before. Earlier versions of this dream start off like a video game. Jumping through a maze in real life, only one chances no second lives. A group with me, fiery and selfish redhead, small and slender with glasses. Always looking for shortcuts. Tall dread head with dark skin. He sleeps in a pod towed by a truck. Gentle soul and very wise although sometimes too trusting. Brunette military man. Same as my height. Secretly scared but very brave. This part requires a fox to jump down and grab the violin. The fox is me but I see from the outside. I grab the violin and rush on to the next part. Pod man needs his sleep so we set up camp. Swampy area. Deep and wide ditches by the road, like man made rivers meant to trap outsiders. Military man tries to get something to eat but selfish redhead takes what was his just moments ago. He is too brave to cry or report her. Dreadpodman is too trusting of her. I grab her and the evidence (glitter for whatever reason) and run to the book where I can report her. She comes after me but I get there in time and write down her theft, leave the handful of glitter to prove it. She becomes livid and runs to dreadman. He still slumbers his pod slumber. But she tips his truck over, into a ditch river, knocking him out of his pod, and his dreads catch on the mechanism. Here is where my dream changes. Originally, his dreads are caught and they pull him under. I look for something to cut them in his slumber. But I find nothing and watch him drown in slow motion. This time though, this time is different. This time I am lucid and I know he is going to die. I find the scissors in my hand already. I jump in after podhead and cut the dreads caught in the trucks gears. I pull him out and he thanks me. Then I wake up.
My day started off with good thoughts and daydreams. Now I can’t see the edge of tomorrow I’m so clouded. I can barely breathe trying to imagine anything after right now. Panicking for sure but why? Why am I so useless on my own? I can’t be independent. I’m not capable of normal adult things. I have tried so hard and nothing works. It always changes and always dies. I think I can manage myself and everything in my control but I can’t. I’m not talking about being a control freak, I’m talking about the things a normal person can do and does on a regular basis and I can’t. I can’t get a job that can support me. I can’t manage money as well as I need to. I can’t sleep like normal. I can’t eat like normal. I’m just so useless. I hope this feeling passes like all the other times I feel defeated. I hope I can see tomorrow turn into today. I hope. Hope is good. Hope is important. I’m so emotionally and socially doomed. Why does everything involve other people? I could manage being alone. I want to run but I have no reason to. In fact I have every reason to stay. Why am I so scared? How can a day start off so good and end so terribly wrong? Nothing even happened.
I have two other children besides the one with my husband, Micha and Jayden. I’ve spent years worrying over how their lives are affected by my actions. I’ve repeated statements to convince myself that I did the right thing, but it never really worked. I even typed up letters to send them when they are old enough to understand my apologies. But today I had a good thought. Today I imagined them finding me and I opened my arms to them. Today I thought about how I would welcome them into my home and tell DJ these are the brothers I told you about. Today I dreamed that they would sit down with me and hear my story and my reasoning for leaving them to their families and they I would hear about their lives and all that they had accomplished. I imagined mocha going to college and working on the side. I imagined Jay working at a full time job and dating a nice girl. I imagined them taking the time to find me even though I feel like I’ve abandoned them. But most importantly, I imagined their forgiveness. I dreamt of their expectations calling me on the phone asking to meet me in person to talk, and when I ask them to my home they would be surprised at how welcome they are to my life. I dreamt that their fears of a horrible woman who wants nothing to do with them would melt away when I ask them to tell me everything and to be a part of the family I started here in Nebraska. I am still scared of a negative reaction, but for once I can see a positive side to it. I felt such a relief knowing that this is a possibility that I almost forgot the guilt I feel for leaving them behind. I have more work to do before I can overcome these feelings, but for today, this dream is enough.
I’ve seen it a few times on Facebook, a meme stating that the body renews its cells entirely every seven years. The sentiment underneath gives hope that one day I’ll have a body that “has never been touched by you.” It’s been almost seven years since I got out of an abusive relationship. Even though almost all of my body may have regenerated itself, I can still feel his hand on my throat. I can still hear his voice telling me I should be grateful for his affection. I can still see him with underage girls going into rooms or sometimes right next to me. I still do the things he taught me, hoping it means I’m worthy enough to be anyone’s wife. But it’s been seven years. I’m married to an amazing man and I have a little boy to raise the right way. Why does he still haunt me, after all this time? Why does what he did still dictate my life? Why did I allow something like this to happen in the first place? I wish I had the answers. Hoping the therapy works. So happy I have an understanding husband. Ian makes the process smoother and easier. Can’t win today. My thoughts are broken and my heart aches over wounds that healed a long time ago. Hoping I can get out of my head tomorrow.