Autism in a scary world
I think the word that comes so regularly to me in autistic life is ‘scared’, feeling scared, being scared. The autistic mind is pushed into sensory overload, forced into shutdown and thrown into meltdown through our experiences of the world. No matter what I put into place or how hard I try, there are always times when the overriding feeling I have is fear.
Add on top of this my inability to regulate my emotions and when things get scary out there, I can’t cope with the level of fear that I feel. I am going through an intense transitionary period. My previous support network has vanished, and I am scared. I can’t sleep at night and I am scared. The world is about to open back up again after lockdown, and yes, I am terrified.
The last couple of weeks I have become more aware than any point in my life how reliant I am on support. The harsh realisation that my health and wellbeing is dependant on the kindness of others. Because the government and council sure as hell won’t help me. What happens when family members don’t help?
Parents of autistic children often have difficulties with autistic children needing to co-sleep. The past couple of weeks I have had a cruel awakening to just how this feels as the child. When the world is spiralling and you are scared, you just want to feel safe. To fall asleep is to let down your guard, it needs a calm mind. If I try to sleep alone, I break – it’s not pretty. If I sleep with my partner, I feel safe, protected, and I sleep easily.
I’m nearly 30 years old. I hate the thought of needing someone to fall asleep. I am doing everything I can to push back against that need. But the reality is I either accept it and get a night’s sleep, or don’t and end up exhausted and emotionally beaten.
Never more so than this week has it infuriated me for people to look at me and see someone ‘high functioning’. I forget to eat when I’m not reminded. I pass out because I can’t drink in a new house. I stay in the same clothes for weeks because I can’t process changing. I have an emotional breakdown because I can’t sleep alone. The list goes on.
Relying on family members is great when it works. Relying on a partner or friend is great when it works. But they are not bound by anything to support me and they have their own life challenges. What do I do when all I feel is scared? Scared that I can’t be independent. Scared of a world faced alone if I had no support.
I am very aware of my own mental and emotional state and have reached out for professional mental health help through this. Help I am going to have to pay for, which I really can’t afford. So many autistic adults neither have the support of my incredible partner, siblings and friends, nor the financial access to mental health help. (If I went through the NHS I’d be waiting months to see someone).
Please pay attention to the autistic adults in your life – or any adult with a disability for that matter. The world is a very scary place when you rely on others to get through the day.
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