Autism Getting Worse

Our ability to tolerate things and how much we care what others think of us both tend to decrease with age.

Most autistic people put up with a huge amount in their teenage years and twenties. Especially if undiagnosed, autistic people might have been suffering through burnout and constantly masking and trying to fit in.

Once you get in your 30s and then 40s and beyond your ability to push yourself into unpleasant situations diminishes, so it's not uncommon for autistic people to withdraw socially as they get older, and to have more difficulty with sensory overload, and also be less willing to mask. I think that's where the feeling comes from that your autism is "getting worse", but it's not getting worse, you are just allowing yourself to be yourself.

Try to be kind to yourself. You will know what you don't like, and you don't have to put up with those things if you don't want to.

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.

Hi Summer, 

I'm sorry you are experiencing this- you are not alone- I actually also feel like 'my autism is getting worse' at the moment. Things that I used to cope with seem overwhelming at the moment- For example I have recently moved back to the city where I used study and I used to have no problem walking accross the market and through the crowds- now I was on the verge of a panick attack and just couldn't cope. Same with other things- I also really struggle with digestion and I think you are right about anxiety making it worse. At the moment I am incapable of eating socially at all which I used to be able to do. I don't know. Maybe it's because over time we became worn out so that we are now less resilient and less able to deal with all these stressful and difficult situations? 

I'm so sorry your family is taking this view about autism- It must be so difficult. My dad takes a similar view- he thinks that 'autism is an excuse' and he said I was ruining my life by allowing myself to be a bit more mindful about how much social things I make myself engage with. Luckily I do not have that much contact with my father so I can choose to not mention being autistic to him anymore. It's still hard though. 

Sending you lots of strength and solidarity. Best, Ann 

Hi Summer, thank you for sharing all that. I know it cant have been easy. First of all I want you to know you are not alone, not at all. You have a whole community of people here who care and are here to support you

Im sorry to hear things are tough with your family and they dont understand, I cant imagine how hard that must be.

What you are suffering at the moment sounds a bit like burnout. When you describe "autism getting worse" it sounds like how I have felt with my burnout. Even things you would normally be able to do you cant do anymore. For instance I used to go to concerts at Wembely and the 02 and football matches at huge stadiums but now I cant even cope with the crowds at my small local football ground and the thought of a concert would send me into panic and meltdown.

I know its hard for you to change the situation at the moment while you are living at home. Im here if you need someone to talk to 

I'm not sure how old you are. But our human physiology can become less resilient the older we get. Mid 20's is a good time to start taking a multi vitamin. Mid 30s to stop binge drinking and Mid 40s to eat a salad every day (depending on allergies). 

My first suggestion would be to go on a FODMAP diet. Mind your biology and perhaps look into more allergy testing. I cannot digest legumes (including the peanut, which is a bean) or cruciferous veg (mustard family) which includes spinach. I'm also coeliac and cannot have grains except white rice. Sugar can add problems with inflammation. Also, I've discovered Lemons are amazing for digestion. But I would look into this. My father fasts one day a week. I'm quite small so that might mean I'll have a few almonds and an apple if I need to stop eating for a day. I also take probiotics which help.

Light, sound and other unnatural sensory elements in the world have been getting worse. I can handle a laptop but only with natural light sources. My eyes will hurt fast if trying to read even a book under LEDs or CFLs. LEDs are not natural light (they don't mimic the sun like a filament bulb) and your brain will have to work hard to deal with them. Keep one halogen lamp around for the evening. https://lightaware.org They are legal for those of us with light sensitivity. 

From what I've found, Anxiety can be part of the autistic hyper-connected autistic 'brain'. We need to learn conflict resolution skills. Resolution is related to monotropism. I've found life-skills incredibly useful. The more I understand about the human psychology or philosophy or how the world works, the less anxiety I feel socially because I have a better understanding of what's happening even if I can't really play along. However, my brain will latch onto a melody at times and it will send my head into an excitement which accelerates into anxiety. It doesn't happen all the time, but it's such an overload that anti-anxiety meds are the only thing I've found to shut it down, like a switch. I've also found them useful to work through conflict in relationships that resulted in heart-break. However, a note that anti-depressants do not help as they don't deal with the same elements in the brain.

ah yeah i see that alot now. someone even shared a facebook post that said something like, autism isnt a excuse for bad behaviour or some *** lol ..... its crazy, i just comment on stuff like that saying having both your legs amputated isnt a excuse to not be able to stand up lol

If you are feeling anxious most, or all, of the time, this will tend to make the physical and physiological aspects of being autistic worse. That kind of stress will have consequences. It sounds like you are living in a hostile environment. Think of how much better you would feel if your family were 'on board' with your autism and were empathetic (something were are accused of not being - wrongly) towards you. You would be much less stressed and your traits would cause fewer problems. Would your family respond positively if you pointed out that their attitude was making you ill? Would they be open to finding out about autism, or to some sort of joint counselling?