I recently recorded a podcast episode (coming soon! Stay tuned!) with a disability activist, and just offhandedly said “yeah, well, it’s really hard for me to ask for help”. She asked me why, and I was pretty thrown off. Why is it actually so hard to ask for help?

The first thing I came up with was all the praise I got in my life for doing things on my own. Sometimes for really mundane stuff, like when I managed to tie my shoelaces for the first time or cook something for myself as a child, and later, when I aced an exam, a solo-activity by definition (why? I think we have to talk about this!). Sometimes it’s something deeper, like how my otherwise awesome mom used to praise me for calculating risks and being cautious and dependable, when it was actually still her job, not mine. All that praise made me feel that getting stuff done on my own and making my own decisions were commendable. Did it also make me feel that asking for help was undesirable?

And from the autistic point of view: even while more often than not my requests for accommodation were met with a positive response, they were also met with wonderment. Folks would turn off the light if I asked them, but would wonder at my light-sensitivity. They would let me track down the source of a disturbing sound, but would say they couldn’t hear it. Did I learn that asking for help exposed my autistic traits to scrutiny and veiled criticism, even before I realized I was autistic or what it meant? And I can hardly imagine what it might have been like for those who did get an early diagnosis and had to go through the horrors of ABA, where expressing their needs was met with either ignoring or penalizing them.

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I need help helping us help each other 

When someone needs help, my natural tendency is to drop everything, be there, find resources and try and solve the situation. But when I need help, I find it close to impossible to ask for it. My reflex is to be the capable one, figure it out on my own, and worry about the hypothetical trouble helping me would be for folks who are already stretched too thin. So I try to figure it out, and end up shrinking what I need to fit into what I can handle alone. This tends to result in exhaustion and burnout. At the advice of a friend, I added a section to my journal titled: “Help I should have asked for and help I can still ask for.” But it somehow didn’t go anywhere, because helping myself never felt as urgent as helping others.

And I'm starting to suspect that’s not even me being an altruist. Maybe it’s just avoidance dressed up as helpfulness. After all, if I’m always helping others, I never have to face how much I need help myself.

When it comes to the specific kind of help I need right now, there is also the following double standard to consider: When an entrepreneur raises hundreds of thousands, even millions, for their startup which they hope will exit, and in the meantime pay them a nice salary, they’re seen as ambitious and visionary, and the fundraising is framed as “securing investment.”

But if I, an autistic founder of a nonprofit that provides strictly free services to the autistic community, ask for €35k so I can work full-time for the autistic community at the absolute minimum pay that I and my three elderly cats can survive on, I might be good material for an eye-watering inspirational story, but also I can’t help but think: Who am I to ask folks to pay my rent and bills? I should just get a “real job”, and try to save up as much as I can before I burn out again. 

And I know another way would be to make paid products and sell services, ask for member fees for exclusive content or have a premium tier on my platform and content. But I don’t want to put the stuff I create behind a paywall, because I know how much many autistic folks struggle financially, not because we’re lazy, but because we’re constantly forced to swim against the current. I build things that are free to use, and I hope some folks would agree to support them with as little as 1 Euro per month, but when it’s time to ask for that support, suddenly it gets too uncomfortable to do so.

Why do I buy into this culture of shame and isolation? I want to do better, face my needs and weaknesses, take the leap and trust that my community will be there to catch me. 

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What I need from you

To do better, this April, aka Autism Awareness Month, I’m doing something uncomfortable:
I’m asking you to be aware of yours truly, an autistic person trying to make this thing I built for our community work, and needing help to do it.

prepped.to needs your help and, yes, your financial support, to go on running. And I need the same to go on running too. I can’t make it happen alone, and I shouldn’t have to. I want to reclaim Autism Awareness Month and turn it into #ActuallyAutistic Solidarity month. And I want to reclaim my “help others” energy and ask others for the solidarity and help I usually reserve for them.

So please consider donating as little as 1 Euro a month, or whatever one-time donation you can afford. You can do so on GoFundMe or on Betterplace, or even via bank transfer. Donations are tax-deductible (see comment and bank details below).

Whether you can donate or not, please share my crowdfunding campaign(s), this blog post, or prepped.to with your autistic community. Heck, share it with your neurotypical network too. Tell them it’s Autism Awareness month, and they should help this autistic-led nonprofit help autistic folks like you help each other not get a meltdown next time they go somewhere unfamiliar.

Whatever it takes, I need your help 🙏

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Comment: Donations on Betterplace and Bank transfers are automatically tax deductible, and you will get the relevant documents in time for your yearly tax statement. On GoFundMe, if you donate up to 300 euros a year, you can submit the receipts and transfer proofs in your yearly tax statement, but you will not receive any further proof from Aut2Aut gUG. 

Bank transfers can be made to: Aut2Aut gUG, GLS Bank, IBAN: DE16 4306 0967 1366 9643 00, BIC: GENODEM1GLS

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