I've been meaning to write this for some time as it's been gnawing at my brain. It will probably be long and rambling because I write as I think, so please bear with me. I also want to say this is from me, Stephanie, and doesn't represent anybody else although my husband and I have discussed what I wanted to write. I also write very openly and honestly and kind of just lay it all out there. So here goes.
First, I want to clarify that we are a small family business. It's just three of us: me, my husband, and my step son who is autistic. Both my husband and I are neurodivergent, but allistic. The reason for noting that will come later, but I wanted people to know that we aren't a "company" with lots of employees or anything like that. Everything you see coming from Happy Hands is just us (and of course the awesome autistic people we contract with for blogs and such).
We started this business because we don't have a lot of money and finding fidgets for our son was expensive. We figured other families had found the same and wanted to be able to help families like ours. We didn't know what we were doing nor much about autism advocacy other than knowing about autism groups for parents and what we knew about advocating for our son. So we jumped in with both feet and tried to figure it out as we went.
In the beginning the content we were sharing was "autism parent" content. It's what we knew. I started hearing from the autistic community about how certain content was offensive or harmful to the autistic community and why. Those people pointed me to places where I could read more. That was when I really learned about autism advocacy and how we could support the autism community. So first and foremost, I want to thank all those people who took the time to point me in the right direction. This not only helped our business, but it helped our family, so my deepest thanks.
Part of that guidance I received was to lift up autistic voices and to listen rather than talk. This is why you rarely see content from me personally on the topic of autism. If there is, it is coming either from our son's own content or written as a parent with our son's consent. I have learned so much from listening to autistic adults and I try to raise those voices, but I am still learning and have and will make mistakes. For that I apologize and I will do my best to learn each time.
Now onto the more uncomfortable part (for me). I've tried to raise voices from small advocates, big advocates, intersectional advocates, etc. I try to share content that doesn't go against what the autistic community has told me and lifting advocates from suggestions from the community itself. In this I've promoted voices that later I found out were promoting harmful content or I've promoted content that groups within the autistic community have disagreed with. This is where it gets uncomfortable for me personally. As an allistic person I don't feel that I have the position to publicly pick sides in inter community disagreements. Usually when this happens, I try not to promote either side so as not to hurt anybody or the community as a whole. Those discussions within the community are for the community to work through. As an allistic, my voice is not needed and from what I've been told, not wanted in those discussion as it is talking over autistic voices. Maybe I'm wrong and doing advocacy wrong. I'm not sure. I also hope this isn't coming across as trying to skirt issues or washing my hands of serious issues. I'm just trying to explain my view and do what's right. I'm still learning.
This is where my ask comes. On the social media accounts I manage, twitter and facebook, I've had people that I respected and looked up to in the autistic community just block us without any explanation. I get it; nobody owes us an explanation and I don't expect one. However, with my own issues of mental health these blocks hit me hard and I sit and worry over what I did wrong. That's my issue and something I'm working through. My husband is better at this than I am and he is able to accept it with "we aren't for them and that's ok". I'm a people pleaser and have a really hard time with knowing I offended people or hurt somebody. I am probably making more out of it than it is, I just don't know. So my ask to the autistic community is this, if I do something wrong, please tell me if you can and have the time/energy. I know it's not your responsibility to teach us, but sometimes it's hard when you are getting conflicting information from the group you are trying to advocate with. Shoot me a DM, an email, or call it out openly. Be honest with me. I'm not an autistic parent who is going to argue with you about it because you are the experts. I'm open and listening and I really do take to heart everything people tell me. I want to learn and I want to help to the best of my ability.
I also want to clarify my sometimes use of hashtags, images, or terms that are outdated, such as using "aspergers", "special needs", the puzzle logo, etc. While those terms aren't helpful, people who aren't aware of the advocacy that is going on still use them (and there are autistic people who use those terms in their content and I'm following their lead) and, like me a few years ago, search for them to find information. I hope that by sprinkling them in with content that talks about autistic advocacy will get those people to read and follow so they can see more content from the autistic community and learn so much more about how to help the community. As parents, it's a big learning curve and it's hard to find the good information when you don't know it's there or have never been exposed to anything but Autism Speaks and other crappy organizations or parent focused groups which is where you are told to start. It's amazing how much misinformation you get as a parent from all the "professionals" that you trust. This is not an excuse to use offensive terms by any means, and as I read over what I just wrote, I'm questioning myself. The road to hell is paved with good intentions as they say. I'm realizing that I need to find a better way to reach those parents. If using those terms offended you, I apologize, that was never my intent.
I've also read from some autistics that they like the puzzle logo and don't use identity first language. I want to support them too and try to have some of those options available, like we have one puzzle chew and we have both identity first and person first language stickers. I don't want to leave anybody out. How does one support those individuals without offending other individuals? For me, this is hard. I want to help. I want people to be happy. I want to support autistic voices. I'm still learning and I'm putting this out there to give you a glimpse from my view. That's all I can really do. If I'm doing advocacy wrong, I apologize and I'm trying.
One last thing... this business isn't about making money for me. We have both joked that if we had a professional accountant (I do all our books) they'd probably look at us and laugh. The way we are doing things is not the "profitable" way to run a business, but my belief is that you don't have to aim to make profits to have a good business. Maybe I'm wrong; I'm probably wrong. I don't care. We'll see how this pans out. It's been a few years and we are closer to breaking even. That five year mark is the real tell. We'll see what happens. For me, I get so much joy putting together packages and imagining the happiness a person will get from their items. Every day, I come home from my day job and am excited to put those together. When we get a positive response from a customer, it makes my day. When things go wrong, we do what we can to make them right. I just want to make people happy. That's what it is really about for me.
So to wrap it up (I know I said one last thing, but this is really the last) I want to give a huge thank you to everyone who has supported us, the contributors who helped us, and those people who have guided us in this endeavor. Thank you to those who have called us out and criticized us. You have helped us grow as people, as a business, and most importantly, as a family. You are the reason we are doing this. Thank you!