January 16, 2021

Supporting your autistic loved one’s mental health

By rosieweldon

These are some thoughts on mental health and being autistic, based on my own experience. Mental health is a huge topic, these are obviously not applicable to every autistic person.

1.   Time
Asking us to process how we feel in real-time is a one-way ticket to a meltdown. If we have experienced intense emotions or stress, then we need time to process it.
My closest friends are the ones I can say “no I have not had a good day, but I’m not ready to talk about it” to. They know it is not personal, I just need time before I can talk about what has happened. If I try to think about it, my mind screams at me to stop.
Give us time.

2.   Shame vs Guilt
Situations will occur in life when we let people down. For whatever reason, sometimes we just can’t do things, no matter how much we want to.
I recently bailed out of a concert with my best friend. I wanted to go, but I couldn’t. I felt intense shame at letting her down. She was incredibly understanding and never tried to make me feel bad or guilty about it.
Other times I have had people make me feel very guilty and blame me for being unable to do things. This is clearly going to affect our mental health.  
If we can’t do something, please understand and don’t blame us.

3.    Mental energy
What I can and can’t do each day is determined by the mental energy I have on that day. The more mental energy I have the more I can deal with. Things like change, noise and people will lower my energy along with many other factors. What costs us mental energy is very different to what costs other people their mental energy. Eating tea outside of my home costs me significant mental energy, these things contribute to mental exhaustion. There are also ways to increase my mental energy, .e.g., engaging with my special interest.
If you are interacting with an autistic person be aware that they may be struggling with mental energy. If this is someone you are close to then devise a system for them to let you know if this is the case. Not only saving us from being pushed, but from you being the target of our possible frustration.

 4.    Today vs tomorrow
Tying into the above two points, just because an autistic person can do something one day, does not mean they can do it every day. There are an innumerable number of factors that contribute to if I can or can not do something in that moment. Please understand this.
(Equally just because we can’t do something one day, does not mean we never can.)

 5.   Different. Not broken.
My depression was (and likely will be) triggered by the feeling of being a failure and a burden. I felt I wasn’t good enough compared to others, I couldn’t do what everyone else could and I couldn’t accept it. The key to fighting this trigger of depression, for me, was to embrace all that I can do and stop fighting for a part of me that didn’t exist. My family and friends were instrumental in helping me achieve this (along with therapy).

6.   Anxiety
Autism tends to be a ‘buy one and get some free’ disability, anxiety tends to be thrown in for a lot of us.
The biggest thing for those supporting someone with anxiety to know is that we often know it is irrational. I know it is irrational to stay up all night going over and over how I will get in my colleagues’ car the next day. Telling me ‘don’t worry’ and ‘it’s nothing to worry about’ will not help.
The best way to support me would be to first apply any logic that I am failing to see. For example, when I interviewed for exchequer, I had terrible anxiety over using an intercom system, I had never used one before, they terrify me. A friend went through the logical approach to it, press the button, wait for reply, say your scripted response and wait for the door to open. This really helped me break down the situation. Beyond applying logic, the best thing, for me, would be distraction. My mind will attach and cycle over and over, it needs help breaking the cycle. Special interests are a great source of distraction.

7.   Self-harm
I will write a full article on self-harm soon; it is a loaded and powerful topic.
Please realise that all the preconceived ideas that a lot of people have around it, all the stereotypes and judgements are largely incorrect. Self-harm is a desperate attempt to regain control of your mind or outlet your mental illness. Unless you have experienced it, you are unlikely to ever understand it. The key is to identify the root cause and try to remove or lower it. I self-harmed through my most severe low of depression, no body knew, it was not a cry for help. It was a coping mechanism. I needed to find ways to cope, without using self-harm. Please be open minded if you ever find out or worry someone is self-harming.

8.   Honesty
Autistic people feel things in extremes. In a lot of ways this can be amazing, but it can also be overwhelming and confusing. It also prevents us from being able to be honest with those we care about when we (knowingly) go one way or the other. If you want us to drop the barrier then you need to embrace all our emotions, in all of their intensity. Autistic life is intense. I do not live in the grey; it is all or nothing.

9.   Still include us
Maybe I won’t be able to attend that party, maybe I can’t go shopping. But inviting me shows you would want me there, if I could. Inviting me gives me the opportunity, because you don’t know if I can unless you ask. Asking, with no attached expectations, means the world to autistic people. Even if we say no every time, ask us anyway.

10.   Alone vs lonely
I like being alone. I do not like feeling lonely. There is a huge difference. People tire me, communication tires me. However, knowing I have the most incredible friends and family, means the world to me. Talking to my best friend, means the world to me. My social interactions may seem strange to a lot of people, but I do not feel lonely.
I have done. I have felt isolated when I was surrounded by family. Misunderstood when I was crying out to be understood.
The autistic person that you love being on their own physically is likely what they want. That doesn’t mean they don’t want to know that people care, that people love them. Being alone is often what autistic people need to restore mental health. Feeling lonely, that’s not good for anyone.

I used to think the worst thing in life was to end up all alone, it’s not. The worst thing in life is to end up with people that make you feel all alone.

— Robin Williams

Autistic people are more vulnerable to mental illnesses. If you have someone in your life that is autistic, ensure you are aware of the signs of mental health illness, especially depression and suicidal thoughts. Ensure they have someone they can approach in confidence, that they can trust will not judge them.

I often found that those supporting me felt they needed to be able to ‘fix me’. I never needed anybody to fix me. I needed them to stand by my side as I got the medical help I needed, as I got back on my feet. I needed them to fight with me, not for me. Please don’t feel that you need to have all the answers to open a conversation about mental health with your autistic loved one (or anyone for that matter).

Different. Not broken.

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