#ActuallyAutistic #AskingAutistics – what is the one thing you Wish you had known when you first discovered you were autistic?
I wish had known about sensory processing differences and how they impact me.
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I just wish I could get a diagnosis / assessment, period. I know I have it….I’m tired of being mis-diagnosed and unable to get the help that I have needed since childhood.
I grew up feeling like an outcast and a weirdo, but never thought I could be autistic. I just had quirks. I was a little strange. I spent so much time alone and in my own head, and I just thought it meant I was introverted and not exactly “normal”. I have been considering this probability for awhile now since I started dating someone who is autistic about a year ago and living with her has made a lot of my own behaviors and thought patterns more clear to me. I am going to bring up the desire to pursue a diagnosis to my therapist when I see her this week. 🙁
I was never diagnosed, but by the time I discovered I was on the spectrum, I had worked out most things for myself, even if I didn’t know they were actual conditions that had names. The only one I hadn’t worked out, and blamed myself for, was poor executive functioning: I was lazy, inconsistent, weak-willed, etc, etc. I definitely wish I’d known about that one much, much (decades) earlier.
Still trying to make sense of tho gs for my 15yr old. She always was a little unique. She wouldn’t walk she would tippy toe she wouldn’t run she would gallop. She was lonely because everyone saw her as strange…. for birthday party’s she would invite the whole class. 3 would turn up she was never invited to other party’s. … ever… she struggled at primary school with no friends. She couldn’t do simple things she would become overwhelmed by every little thing. And have total meltdowns or shut downs. Secondary school was worse. She was bullied from day 1. She was diagnosed with dyslexia. She started having panic attacks and anxiety. She would self harm because she couldn’t cope. We have home schooled for 3 yrs and she has changed so much she still has meltdown ‘s she can’t sleep she can’t go on buses or to shops on her own because she can’t cope .. she hates anyone touching her back and neck. She said her long hair hurt her back. Her senses are all over the place. She doesn’t understand that sometimes things shouldn’t be said. Sometimes it’s not good to be so honest… everything is black and white and she let’s people know what she thinks. When she can’t explain how she feels she has a total breakdown and she has even pulled her hair out. We’re still trying to get a diagoses of something… we feel useless because we don’t understand how she feels. She’s shows happiness when she should be sad and she shows sadness when she should be happy. Her emotions are all wrong… we don’t know where else to turn to get help for us to understand her. For us to try and make things easier for her.. it’s so hard sometimes. We don’t know where to turn
For starters, you have the wrong attitude towards her. Her emotions are not all wrong. Emotions can’t be right or wrong. She is different, and that’s what you’ve got to accept. Stop worrying about fixing her, because she’s not broken. Instead focus on helping her to understand HOW she is different. Then, if she wishes to blend in more, she knows where to start. But note that “masking” takes a HUGE amount of energy and focus. It robs more important activities of the energy and focus they deserve, and is a great physical and psychological drain. And can kill her if she does it too much. Time to ask yourself if you want her to live a happy, long life, or if you want her to live a miserable, short life just for the sake of “being normal. “
I really appreciate you sharing this. Our grandson is 4 and on the spectrum and while we know he has many sensory differences, he isn’t able to tell us quite yet, but as we learn we try to be more mindful of them and not put him in a situation where they will cause him pain.
I know right, the weather can be so cold when you’re hypersensitive/autistic! I’ve recently started wearing ‘heated’ waistcoats (powered by USB power bank’s) It’s certainly helped me stay warm. 🙂
I’m affected a lot by being around bright lights and sound for too long, wearing tinted sunglasses has helped me so much. A similar thing cured my sleep insomnia by wearing a beanie hat (to block out light) and by wearing soundproof headphones (normally for power tool usage…) for a few minutes and that pretty much makes me nap/sleep without fail. Wish more autistic people knew about this, can’t recommend enough!
Must say, the sound of that bus letting air out of its suspension couldn’t have been better timed. Gives the perfect example of sounds/sensory being overpowering for us Autistic.