Published on 12, July, 2020
Hi, I'm new to the community. I've not tried talking online and I do feel a little anxious but I'm hoping this will be a safe space for me and I'll be understood.
I live with my family but they don't believe in autism and see it more as an excuse and force me to talk and do things that trigger me and cause anxiety. I was diagnosed a few years ago had to go through it all on my own my family didn't want me to do it and said I wasted NHS money and time. I'm having to mask all the time every day and it's tiring me out and I get burn out. I've literally no one to turn to and no one who understands me and what I'm going through.
I've noticed that my autism is getting worse, the things that affect me I mean. Is that common? I don't know much about it. I get eye sensitivity. I'm sensitive to lots like sounds and touch but my eyes and brightness are affected really bad. Everything is so bright, I wear sunglasses a lot now even inside because of my eyes. I can only use my phone and laptop for about 10-15 minutes before my eyes start hurting before it becomes too much for me. Usually the result is me feeling tired, dizzy and my eyes feel like they are strained.
Digestion is my other issue. My stomach hurts, get feelings like trapped wind a lot like there's lots of movement in it, very uncomfortable and things can be 'loose'. I do have IBS and anxiety so it's probably linked with this but I do struggle with it and feel it's worsening.
And last other than struggling with being social is anxiety. I have anxiety and it affects me each and every day but weirdly it doesn't have a trigger, or if it does I've no idea what it is. I'm anxious all the time for some reason and it causes a lot of physical and mental effects but nothing seems to improve it and I no idea what causes me to feel so anxious. My doctor keeps suggesting medication but I know side effects are common and I don't want them so I say no.
Just feeling alone at the moment.
Very alone.
Hi Summer
Welcome to the community. I think you will find a lot of understanding here and I hope it will help you to feel less alone.
I agree with Billy that what you describe sounds like autistic burnout. Having to mask all the time every day has a cumulative negative effect and results in burnout. It is common for sensory tolerance to get a lot lower during times of autistic burnout. I have been going through a period of burnout myself and my sensitivity to noise has got much worse as a result.
I expect it is hard for non autistic people to understand, particularly if they have little knowledge of autism or compassion towards the struggles being autistic entails. They will probably not be able to understand why you could previously do something but are no longer able to. Maybe they see it as you are being deliberately difficult or obstructive, when nothing could be further from the truth.
Having IBS and our digestive systems being very sensitive to our emotions is common in autistic people. I know I experience that a lot too.
I understand what it is like to have anxiety all the time. I usually wake up very anxious and it is there all the time to some extent at every waking moment. I suspect in your case it is a manifestation of the hostile environment you are living and the constant feeling that you have to mask.
I am not sure what type of medication your doctor is suggesting but you have a right to say no if you don't want them. In my experience doctors are very keen to prescribe antidepressants for anxiety, especially the SSRI type. The various types I was prescribed did not help at all and some made my anxiety much worse. Now I refuse them like you, but as a result my GP has given up on me and trying to treat my anxiety. Doctors have little understanding of anxiety in autistic people and the meds they prescribe have not been tested on autistic people.
It must be incredibly difficult not having a supportive family. Do you have your own room you can retreat to for some quiet time without any pressure? Would you be able to explore the possibility of moving out of the family home?
Being forced to talk and doing things that trigger your anxiety is undoubtedly making you worse. For the sake of your own health and wellbeing you should try and be as firm as you can about what you need. Try not to be forced into doing anything you do not want to do.