I have a young daughter with severe autism... cannot speak.... cannot understand words.....she easily gets mad and angry with self-harm when people cannot understand her. She avoids people and social situations. I can see into her eyes... she doesn't want to be alive. I know one day.... she will end her life at a young age. Its heart breaking.....
I'm so sorry about your daughter's struggles. It must be so difficult for her. I can communicate my distress effectively most of the time; I can't imagine the pain of being unable to. I know it does not help your situation, but I wish nothing but the best for you, your daughter, and your family. I hope they can find a way to help your daughter communicate and that her burden is eased. It sounds like a truly hard existence.
this was so emotional to read, I really feel for you. honestly you're an amazing writer and I've read a lot about autism but truthfully no one has explained it as well as you have. I would totally read blog posts or more posts from you on here. I have sensory issues and every time I experience them I think how there's people that feel that way constantly and it breaks my heart. this modern world is not built for autistic people to succeed or be happy. I wish I could change everything. everyone deserves to be comfortable and safe.
if you don't mind me asking more questions about what it's like having autism?
when you're sh do you catch yourself during it and want to stop? does it feel like an impulse you can't control?
if you don't feel like answering no worries :) thank you for sharing
Sure, you can ask questions.
I have some control over the impulse, but it's more complicated than just stopping. On one hand, I want to stop because it's bad and causes me difficulties. I've gotten infections in the sores on my hands and it leaves scars. I remember that one time as a child I picked my skin all the way down and was left with a large hole on my hand that took months to heal. It can easily get very out of control.
However, on the other hand, it serves a purpose. My stimming helps me regulate my distress and manage the feelings of overwhelm. I have other stims (pacing, listening to music repetitively, rubbing my nail along my thumb, leg bouncing, fidgeting with objects, running my tongue along my lips), but not all of them can be used in public or are as effective as skin-picking in helping me self-regulate. It's often a choice between picking at my skin, or having a public meltdown/shutdown, or running away. I don't really want to wind up collapsing into a rocking, crying ball in the middle of the supermarket, or bolting out of a dinner with friends to run home. The self harm provides something else to focus on other than the lighting, the noise, the panic. It allows me to remain somewhat normal around other people, and its subtle enough that others don't immediately look at it as really fucking weird.
The other big reason it's hard to quit is because I don't immediately notice I'm doing it: it's a bad habit similar to nail biting or saying "like" in every sentence. I'm not always totally consciously aware of it. I also have a weirdly high pain tolerance, so what starts out as light scratching or running my nail along my thumb quickly progresses into me doing some serious damage without noticing I'm doing it.
The only way I've found to be able to quit the picking is to totally avoid going outside or interacting with other people. I didn't leave the house much as a teenager (at one point not even to the end of the garden for over six months) and was diagnosed with agoraphobia. While it stopped the self harm because I didn't need it as much in a controlled environment where I wasn't constantly overwhelmed, it was a lonely, boring, and isolated existence which I wouldn't choose to return to.
I think it's hard to imagine a world that could accommodate my needs - things could be significantly better, sure, but I'm not certain everything could be fixed. I'm upset by things like LED light (I can see them flickering) and the music they play in shops. If I'm particularly stressed, even overly bright clothing, sunlight or the feeling of fabric on my skin gets to me. I can't see how the world could be altered to totally account for my disability without it being spoiled for everybody else. It would probably be easier if people didn't immediately write me off as a nob for wearing a headphones all the time, or a hat and sunglasses indoors, but even that isn't a perfect fit,
I have very high functioning autism ( Aspergers) and this was painful to read. I relate so much !
I am very intuitive, I can read up clues and body language and can detect sarcasm and what people mean. I can also tell what kind of person someone is just by seeing their picture, and be correct. I don't do faux pas and I don't have trouble being misunderstood or misunderstand.
That being said, because I can so well read up people, I sense a connection with very few of them. They have to be pure at heart to bond with me- just like with a cat or a dog.
I too hate noise, being touched by surprise( this I hate most!), crowded environments, strong unexpected smells like the neighbor's cooking. Loud laughing or yelling makes me panic. Despite this, I work full time in hospitality, a customer oriented job in a fast pace place. I fake a cheerful persona with a happy sweet smile and I am very popular with clients. Needless to say, at the end of the day, I crash!
I cannot for the life of me be mean or impolite. It takes a lot to stand up for myself, usually that is when I'm driven crazy or it involves standing up for others. I avoid conflict and aggressive people. I crave peace and silence with all my soul.
Having a family is out of question. Putting up with a husband's friends and family, accompanying him at social functions...oh hell no. I feel drained just thinking about it.
I'm also clumsy and uncoordinated, I constantly drop stuff, bump into things. It took a lot of will to learn swimming, and now I am pushing myself for the driving license. That would be a big achievement, because I have to overcome both incoordination, and the fear of things in movement. Ah, and I did mention Attention Deficit Disorder? Not hyper. But if someone talks to me when I'm doing something, the task is messed up. It also makes my brain literally freeze. I can only focus on one thing at a time. Despite this, I think I can get myself into driving, with effort and discipline. It would be part of my growth before calling the Life game quits.
My stimming is skin picking too. My nail cuticles are always picked at. Lol. At least it's not nails biting or anything.
Yes, life is definitely hard for us autistic enough to be different but high functioning enough to realize it.
Yeah, it's hard to be able to pick up on the social cues, but not necessarily able to respond correctly or to still be unable to form that connection with others. You're right about animals. My dog is my best friend. It feels like they're the only ones who truly do not judge.
I managed to sort of hold down a temporary job over the Christmas period. I was almost fired because I wound up attempting suicide twice, had to be hospitalised for a bit, then couldn't go to work because I was on round the clock suicide watch. It wasn't even the people-ing part that got to me; it was having to organise myself everyday, the constant music, the noise, and the random schedules. I'm actually quite extroverted - I need social interaction to feel energised and like myself, but it's so hard to find it in an environment I can cope with. Everybody wants to spent time in bright, loud, overwhelming environments! Even my local RPG café plays music all the time, has bright lighting and is painted yellow! It feels like there's nowhere for people like us.
Also, have you heard of dyspraxia/ developmental coordination disorder? It commonly occurs with ASD and, for me, it better explained my clumsiness than autism alone. It also causes issues with motor planning and executive function. I've found that adapting my life to account for it helps. If you're having significant issues in those areas, it might be something worth looking into.
like do you have set triggers (sound effects, colors etc) or can they change on the day/ mood?
