When I was a child I was taught to always ask for help when I needed it. I did so on countless occasions. Even though I always preferred to do things myself I often ran into problems I could not solve independently. And so I asked for help.
I am lucky in the way that I was able to speak and communicate well enough to do this. I recognize that privilege. But believe me, just because I was able to voice my need for help I did not always end up actually getting it, too.
When I was very young, before I started elementary school at 6 years old (which was the standard age for first grade to start in Germany), I got help frequently. I was always the smallest child everywhere. I was a girl.
Those two things alone were reason enough to lead adults to respond to my asking for help with actually helping me out. I very rarely got challenged or doubted in my need for help.
This changed as I got older. The older I got the more I got compared to other children. Either children the same age or children the same gender as me. The older I got the more my asking for help was responded to by phrases like this one:
“You really should try doing it yourself.”
Of course I had already tried many times before I even asked. Most of the time the adults did not know this because they had not seen me try. So I told them. I let them know I had already tried but could not do it. Then I would get a response like this:
“A big girl like you really should be able to do this.”
Followed by the refusal to help me out. And the forcing me to keep trying it myself. On very rare occasions my constant trying actually lead to me being able to do it in the end. But most of the time my constant trying only lead to constant failure. And constant failure lead to total frustration.
Eventually this ordeal lead to the growing sense that I should be able to do this because everyone else could. And that since I could not manage what everyone else could there must be something wrong with me.
There were things that I eventually managed to work through, figure out, and succeed in. Those were mostly related to practical skills like dressing myself, tying my shoes, climbing a tree, riding a bike, jumping rope, drawing a picture, and so on.
Most of the things I did not manage to eventually succeed in were theoretical, abstract, and social skills. Things like figuring out when to speak and when to stay quiet and wait. Or how to start a conversation. How to form and uphold a friendship. How to assert myself into an already begun discussion. How to understand people on the phone and communicate that way. Which words to use in everyday social interactions like at the store, at the post office, at the doctor, and with neighbors. How to respond to open ended questions. And so on and so forth. To put it simply: Anything related to human interaction remained a mystery to me. No matter how many times I was told that I should really know by now.
Today I understand the reason why people so often refused and still refuse to help me. They assume that if they help me with something I will never learn to do it myself. And that I will eventually learn to do it myself, if I just keep trying. Thus they assume they are actually helping me more by not helping me when I initially request their help.
Theoretically that makes total sense. And with non-autistic people this is often true. The problem with this assumption is that it is actually false when applied to me (and many other autistic people).
What if “If I help her with this she will never learn.” does not automatically lead to “If I don’t help her with this she will learn.”? What if I will not learn no matter if you help me with it or not? What if I am in fact incapable of doing something and will forever be incapable?
If a blind person came to you and asked you to read a sign out loud to them because they cannot see, would you tell them to “Just keep trying, you will get there eventually!”?
If you witnessed someone doing that would you not think they are extremely cruel, rude, and even inhumane?
Then why do you keep forcing me to keep trying to do things I have firmly established I cannot do? Just because something appears doable for you does not mean it is or should be doable for everybody else.
It is nobody’s place to tell me what I can or cannot do except my own. I appreciate well-meant encouragement from people who know me well enough to know when to stop and start helping. I do not appreciate people who do not know me to claim the right to judge my abilities and treat me according to that judgement.
I have a fear problem. I am aware of this. I have always had a problem with experiencing too much fear. Today, due to the way I have been treated and the experiences I have made over the last three years, I have a serious anxiety disorder.
There are many things I cannot do anymore today that I used to be able to do just fine. My anxiety gets in the way a lot. But for some reason people around me seem to believe that anxiety should not be a reason not to do something.
I have been told for years that the only way to beat fear is to ignore it. In fact I have been told this by several psychiatrists and therapists in the past years. I have been told that if I just ignore the fear, it will eventually go away.
And I was stupid enough to believe them. I did not understand that a rule that does work for countless non-autistic people might not work for someone with autism.
My naivety in believing that experts must surely know better than me lead to me ignoring myself. I have ignored my fear. I have ignored every psychosomatic symptom my body has thrown at me for the past three years in order to beat my fear.
I must surely be cured now, right? After all three years of daily fight and effort must make some dent in the problem. I am sorry to disappoint you but that has not happened.
What has happened is the complete opposite. My fear has gotten worse. My physical symptoms which show how much stress I am constantly under have gotten worse. My body cannot cope with the intense level of stress even simple everyday things put on me anymore.
I do whatever I can whenever I can do it. But instead of that slowly curing the problem like it seems to do for non-autistic people the basic problem stays the same.
Even when I have a success it is just as difficult the next time I try. There is no constant change for the better. And because I am made to believe that the constant change for the better should be happening I am blaming myself. Yet again. I must not be doing enough. I must not be doing it right.
This is one of those refusing-help-to-help-me-situations I was talking about earlier. By refusing to help me, and forcing me to live my fear day in and day out people are not helping me to get better. They are helping me to get worse.
Leaving me alone to deal with problems I cannot ever beat only leads to complete mental, emotional, and physical exhaustion and burnout. And it makes me so angry.
It makes me angry how people refuse to accept that human beings are individuals. How they refuse to accept that what helps one person might not help another. How they claim to know myself better than I know myself after having talked to me for maybe fifteen minutes.
This is the case when I ask for help with anything really. I have been so traumatized by people refusing to help me and judging me for asking for help that I barely ask anymore. I will rather suffer in silence than be ridiculed yet again.
People interacting with me need to understand one thing: I do not ask for help unless I need it. I will go through a meltdown before I bring myself to ask for help because that is what years of refusal have done to me.
I am trying to teach myself to ask again. Because asking and receiving help is a very important self-care skill for me and many other autistic or otherwise disabled people. Asking for help means knowing and accepting my limits. It means taking good care of myself. It has nothing to do with avoiding or being lazy.
When someone asks you for help it is not your place to judge if that person actually needs help or not. It is only your place to judge if you can and are willing to help or not.
“Sorry, I cannot help you right now.”
Perfectly acceptable. Give a time estimate on when you might be able to help if you can or refer me to someone else. Thank you!
“Sorry, I do not want to help you right now.”
Perfectly acceptable. I value honesty. Just say it to my face. I can handle it. I will probably not like you when you say it like that but hey – I do not have to like you. At least you are being honest and I can respect that.
But steer clear off anything along these lines:
“Just keep trying, you’ll get it eventually!”
“You really should be able to do this you know…”
“If I do this for you, you’ll never learn to do it yourself.”
“I KNOW you can do this.”
“Don’t be lazy.”
“You just did this yesterday, you can do it today.”
There are things I cannot do. There are things I will never be able to do. And there are things I could theoretically do but if I do them, it will have adverse effects on me.
I can theoretically call my doctor, ask for my test results, and make a new appointment. But it does not matter how many times I repeat this process it will always be just as difficult as the first time.
I will always have the same difficulty understanding people on the phone. I will always have the same difficulty figuring out when to speak and when to listen. I will always have to use so much focus on the spoken words that it will become extremely difficult to keep track of the conversation.
No matter how many phone calls I go through, they will always remain extremely difficult and leave me exhausted. Believe me, I have tried for years to just practice, practice, practice, like everybody told me to.
So I ask to use written communication instead or, whenever phone calls are unavoidable, I have people call my parents and not me. It is not at all difficult for my parents to take a call. They happily do it for me. And I do other things instead.
So while I have the theoretical ability to do a task that does not mean that doing the task is healthy for me. Thus even though I am able to do a task that does not mean I should be doing that task. You could smoke five packs of cigarettes a day and drink two bottles of vodka but you know it is harmful for you and do not do it (I hope).
I could theoretically do certain things but because I know by now that they are harmful to me I try not to do them. Instead I ask for help. Again, what is doable for one does not necessarily have to be doable for another.
I know my limits. I am trying my best not to push myself beyond those limits as I know that leads to burnout and breakdown. Things could be a lot easier for me and people like me if others just stopped judging us.
I should not have to feel bad for asking for help. I should not have to feel bad for not being able to do certain things. Nobody should judge another human being for knowing and respecting their limits. Be it the actual disability to do something or the need to avoid doing something because it is harmful to you.
Now that we have established that refusing help in the ill belief to do good that way is not a good idea let us think about helping too much. I do not often have a problem with this so luckily I can keep this brief.
I know my mother feels a lot of guilt for not getting my diagnosis earlier in my life. I know she feels guilty for having treated me under the premise of being neurotypical and just acting up on purpose. I know this is the reason why today she often goes overboard with helping me.
I often have to remind my mother that I moved out when I was just eighteen and have lived alone ever since. I am very capable of doing many things involved with living as an independent adult.
I do not need help with household chores for example. Yet my mother repeatedly reminds of things like how a washing machine works. How often to clean and how. How to budget money throughout the month. How to buy groceries, what to look for, how to get good deals. Things like that.
She does not do this with either of my two younger siblings who moved out way later than me and also live alone now. And that even though one of them actually could benefit from some household lessons.
I know my mother does this from a place of love but it does get annoying. Her way to speak to me also bothers me often. She changes her voice when she talks to me compared to my siblings a lot. She treats me more like a child than an adult.
Now yes, I need help with a lot of things. But my mind is still that of a grown person. I am an adult. And even though I am not the same kind of mature as non-autistic adults (this should be another blog post some time) I am also not a child.
People treat me differently the second they hear my diagnosis. This is not a thing of my imagination. They assume things about me when they learn I am autistic. Those assumptions lead to their way of treating me.
Generally this just means people assume incompetence. The simple solution to this is to always assume competence. If I cannot do something I will let you know. It does not bother me to state my need for help if I do not get judged for it. I would much rather be overestimated than underestimated.
To be honest finding the right balance between helping and staying out of someone’s business is not easy. Here is the simple guideline to make it a ton easier:
1. Always assume competence.
2. If help is needed, help out without judging.
3. If you ever wonder if you should be helping do offer help politely.
4. If your offer to help gets declined stop asking, do not insist on helping.
Simple, right? I hope this gave some insight and will lead to less frustration for people needing help and more understanding for all the possible helpers out there.