Non-profit Organization

Finally finished. This is about burnout but I’m posting it here as I also wanted to explain why I dropped out of the proposal. I still have some guilt about that after getting others to write letters of support. Hopefully, I can now put this behind me and move on. Studying burnout, I’ve read it’s best to analyze events afterward so you can protect yourself for the future. Sorry to write so much but I am autistic afterall. I don’t know how to tell what people were thinking so I’ve described some of the events that overwhelmed me and some of what I thought was going to happen that didn’t so maybe I can make some sense of where I went wrong. I realize this will be confusing to read. There were two other group members at a meeting on July 27, one of whom was made a lead by Dan the next day.  So, interactions with one member are in italics and the other group member is referred to as ‘the other lead’ or ‘one of the other leads’ after that meeting.   

Off the top I can say I shouldn’t have agreed to the funding proposal in the first place, due to the issues we had just encountered, and the personal issues that I was dealing with. To me the proposal was mainly a positioning initiative or strategy where we would become a not-for-profit, establish our organization within the NGO community, and market or promote awareness of both our organization and autistic adults/seniors to government, media, and the public beginning the awareness portion of our mission. “Nothing about us without us” seemed to be the theme. The project was for four and a half months, Nov-April 2024. I agreed to participate after reviewing the work outlined in the proposal.

The mistake I’ve made twice now is assuming people want to work with me whenever they approach me and propose we create a non-profit together. I understand now how silly that is but at the time I didn’t. I assumed everyone was being straightforward. So, I tried my best to ensure that I’d be able to achieve whatever we were committing to doing for autistic adults and autistic seniors. To that end I posted in the forum in response to Dan, what I thought had gone wrong the previous month and how I thought we could do things differently this time and I encouraged everyone to read it. I assumed we would build on the work we had done earlier with our mission, mandate, and vision statements. We had already discussed that there was a lot of work ahead of us with awareness and acceptance. We didn’t want to be directly providing resources as we didn’t want to end up in a situation of perpetual fundraising. I assumed people still felt that way. I confirmed with Dan that he was not interested in our group providing physical resources.

I also sent an email about what we were going to do differently this time including going step by step and being careful not to take on too much so no one would be overworked or overwhelmed. I thought everyone was cognizant of the other issues facing us like members’ busy schedules and that everyone knew how overwhelmed I was going into this. I asked everyone to ‘share any comments, changes, updates, concerns, etc., with the group so we would all be included.

I had anticipated we would lean into our positive autistic characteristics as so many of them lend themselves to successful project management. Things like Methodical approach, Honest and straightforward, Logical thinking ability, Being precise and detail orientated, Exceptional honesty and reliability, Being dependable in regards to schedules and routines, Strong adherence to rules, A capability for alternate problem solving, Methodical approach, Analytical, Spotting patterns and repetition. But unfortunately, that was not the case. A missed opportunity to let our autism shine.

In my previous life at Veterans Affairs (VAC) I was involved in many projects and whether they were small or large, successful projects had this in common: the project team would unite around a shared vision and work together to implement it.

We started this July 13th, and the deadline was July 31st, so we only had a short time before submission.

July 16th, I sent a message again mentioning that we had to ensure our expectations do not exceed our capabilities/capacity.  I also asked whether we needed to provide more detailed information regarding the budget and how it would be spent.

July 18th I wrote: “How should we proceed once we've all reviewed the proposal? Hopefully, others have some updates or suggestions, or corrections as well. Do you want to get together to create our final version of the proposal? I know everyone is busy so I'm not sure when/if people are available to get together. The proposal has to be submitted by July 31, 2023.I'm not trying to pressure anyone, I'm just hoping we can agree on a timeline for this proposal to calm my anxiety. (that emoji is supposed to represent nervous laughter) Thanks!” 

On July 24th Dan commented “Did we have any more feedback come in on this? 🙂 With the deadline approaching we likely want to get a final version ready to submit. Even having 'letters of support' from people who don't mind saying they support the initiative and want to see it move forward would help out quite a bit, I think.” 

I posted on Facebook and the website for letters of support.

Georgina provided some great input to the proposal but no one else responded to either of my emails which should have been red flags for me. As difficult as it was for me to try to wrangle people, to have no one respond while our planning/meeting time was running out, left me increasingly anxious. Uncertainty is a nervous system nightmare for autistic people like me.

July 27th, I set up a meeting with Sandy Slade to discuss the difference between nonprofits and not for profits (his group is a not for profit) and invited the people who said they wanted to go. One of our members told the group she had an email marketing plan that would have solved engagement issues for PEI Autistic Adults, but I wouldn’t let her implement it. I have no idea why she said that, as no one has ever contacted me about such a plan, but it was very hurtful to me that she would say that and blame it on me.

After Dan and Sandy left the meeting one of the members said she disagreed with what I had written earlier about ensuring our expectations do not exceed our capabilities/capacity. I explained repeatedly that I already spend hours every day in one way or another supporting the group and I don’t have more time to give. I said this multiple times. I had tried my best to ensure what we were committing to was doable.  She wanted to make a big change to the proposal, and I was dead against it as we were just days from submission, and everyone was already pressed for time.

After she left the meeting, the remaining member started telling me how poorly designed our website is and how the poor design is probably preventing people from joining. She wanted to go over the website line by line to tell me everything wrong with it, poor font choice, etc. I tried to explain that, as outlined in the proposal, we were hiring someone to build a new website. I had no idea why she was going on about this and kept saying I had to go as the meeting had already lasted well over two hours. I should have kept the meeting on track and then shut it down when Sandy left because I had no idea what was going on.

If anyone wanted to suggest changes to the proposal, why wouldn’t they have submitted their ideas to the group? Why wait to corner me days before submission? What was I supposed to do with that? In all the meetings and discussions we’d had, no one mentioned wanting to hire a consultant.

That evening I was extremely anxious and worried I had f’ed up again by getting involved. Worse this time because I had convinced others to write letters of support for the project. I started to panic. Dry mouth, ears ringing, and I felt like I was vibrating inside. Drastic changes at the last minute made me feel like the rug had been pulled out from under me as like many/most autistic people I find things like that difficult. I thought I was with people who accepted me but instead I felt like I’d been blindsided.

Regardless of my opinion, the other two leads sent out a new version of the proposal. They now wanted to hire a consultant to do “…a broader PEI based community needs assessment that would include an online survey, a few virtual and/or face to face focus groups and other types of autistic friendly community engagement activities/outreach so that we can reach additional undiagnosed, self-diagnosed and diagnosed autistic adults and seniors on PEI to better understand their needs...” I don’t know who besides me even read the new proposal. It should have been shared with everyone including those who provided letters of support for the original. Otherwise, that’s called ‘bait and switch.’ I know I wouldn’t have joined in the first place if I knew what they were planning.

Besides the issue of changing things at the last minute without ensuring the team or supporters are aware of the changes, the need for what we were proposing was already covered in the proposal. If a new ‘need’ was identified, we should have discussed as a group how to best fulfill that need. I mean, normally for a project, you would identify a need, determine that no one else is working on that need, and then propose the best way to address that need. That’s the way the template for the proposal was laid out. Instead, these new tasks were just added to the end of the proposal under the heading “How will you measure the success of your project?”  There was nothing proposed in the proposal that required hiring a consultant.

I’d been involved in doing surveys and focus group testing of disabled people when I was at VAC and they’re a lot of work and there are ethical requirements to be considered. This aspect of the project alone could have taken the project team at least four months, a lot of work for people already too busy to respond to email. I had many other concerns including taking issue with the ‘othering’ of autistic people. The proposal was all about “Nothing about us without us” and now we’re hiring a consultant to study autistic people “to better understand their needs.” Why would a group of autistic people need to talk to a neurotypical consultant?

(The elephant in the room was, of course, the fact that we had all just participated in a comprehensive needs assessment done by an autistic researcher following ethical guidelines with compensation for the participants. But since this piece was added to our proposal at the last minute on a weekend it wasn’t until the following week that I was able to confirm that we would get access to that data.) 

One group member continued her complaints about our existing website, creating a survey to critique its content. She emailed that she was working on designing a new website and we could then use those funds for something else. ?? I was even more lost by this point. Mentioned multiple times how overwhelmed I was, and I still have no idea why we were spending so much time talking about the website. We were supposed to be finalizing the proposal. There were known functionality issues with the existing website that I’m unable to fix alone. For that reason, we were hiring a web designer to create a new website and as far as I knew that was still in the proposal.

I tried to get details about what they were now planning and expressed some of my concerns. But for me, the weekend was chaotic, my concerns were ignored, and I didn’t get any details. One of the other leads emailed she just came up with the needs assessment, focus groups and outreach on Thursday evening and it would be “developed in a way that feels good for our group.” She wasn’t set on doing it but “it doesn't hurt to include it.” I don’t know what either of those things mean.

“developed in a way that feels good for our group” tells me nothing and sounds like doublespeak. It also sounds they didn’t have a plan and it would be up to other people to figure it out.

“it doesn't hurt to include it”?? It doesn’t hurt to ask for funding for something we’re not doing?? Or did they mean it doesn’t hurt to disregard everything I’ve written since we started this? Honestly, then, and now, I don’t know what they meant by that.

Georgina sent a fantastic email with a lot of useful information in it, talking about planning, involving stakeholders, breaking things down into manageable chunks, etc. As far as I know the other leads ignored it.

I asked the other lead what was meant by “it doesn't hurt to include it” meaning the needs assessment in the proposal. But I didn’t receive a response. In my message to her I also explained my feelings again about the amount of work in the needs assessment. And explained again my own needs for details and planning to calm my anxiety. I expressed how much hoped we would work together as a group and consider each others’ feelings.

The other other lead emailed to describe our options for the proposal as either doing the needs assessment, focus groups and outreach with a consultant now or doing it later. None of the concerns that I or anyone else had raised about that were even being considered. The other two leads would be using the nonprofit funds to hire a consultant now or later.

I sent another email Sunday still talking about how overwhelmed I was and what a great email Georgina had sent. Wondering whether we’d be able to create a plan all could follow. And asking them to consider that if people don’t have time to review a proposal or respond to an email maybe we should not expand before we’ve even started. I asked that the needs assessment et all be removed from the proposal.

After that there were more messages that I didn’t understand, that seemed to be talking about expanding the scope of our project even further. I was really overwhelmed and sent another email explaining that I would not be able to continue like this. Asking that they not keep adding things to the proposal and that the needs assessment be removed.

One of the other leads replied that nothing was being added to the proposal and the needs assessment Was being removed. Apparently the other two leads had already finalized the proposal themselves. Although I was supposedly a lead on the project, I didn’t even see what was submitted. My whole weekend wasted on this.

Based on no one responding to my messages about overwhelm and wanting to create a plan, discuss things, provide details, and work together I knew I couldn’t continue like this. I also had concerns that they weren’t planning to follow the proposal anyway, it was just a vehicle to get funds. That was another problem for me, it never occurred to me that we wouldn’t be submitting an honest proposal. It was devastating to me that we would proceed in this chaotic manner and potentially end up with nothing. Why not do it properly?

A couple days later, I sent an email describing the meeting with Sandy and some options for the Not-For-Profit training. One of the group members responded that she wouldn’t be taking the training as she was working on the PR/marketing/web design. I have no idea what that meant. Had the rest of the group agreed with that? Had the proposal been updated to reflect we were now doing everything in house?

It was around this time that I arranged for us to receive a copy of the needs assessment data from the federal survey for PEI participants. I posted on Facebook and the website. No one from the project even commented.

At the next regular Saturday meeting, I asked the group if they thought ADHD and Autistic people could create and follow a plan together. Whatever I said, one person said the group needs a new lead, at first calling it a guide. A new lead with a nicer tone who didn’t make so many demands was needed to be a guide. Whatever I said about creating a plan, that was the response. It was somewhat frightening to me, and I had difficulty responding. Which was another failure on my part because I was hosting the meeting and should have ensured everyone followed the guidelines and didn’t crap on other members. But I was unable to respond. Like approximately twenty-five percent of autistic people, I’m semi-verbal, losing my words when I’m in situations that make me anxious. (I’ve written about this before including a poorly written but popular blog post.)

Obviously, I don’t think her complaint was accurate. My attempts to guide people had been ignored and as an autistic woman in an autistic group, overwhelmed and asking for help, I think my tone was fine. I don’t think I demanded anything until the last day when I asked that the proposal be changed back to the one everyone had seen and supported. My ‘demand’ was that we not overwhelm each other. There were already three leads at this point and anyone reading the email chain would have known I was not the decision maker.

But this was extremely hurtful to me. It was obvious the project leads didn’t want to work with me, and some project members didn’t even want to hear from me. I’m too old to waste the rest of my life anywhere I’m not welcome. After much anxiety and many tears, I contacted Gender Equity Diversity Inclusion (GEDI) and asked that they remove my name from the proposal. On August 16, Sandra Sunil assured me my name had been removed.   

Although I had the symptoms, I had difficulty recognizing that I was in autistic burnout as the only comparisons I found in the online autistic community were autistic people talking about dealing with neurotypical people who would not accommodate them. Their comments mirrored my experience except that I was an autistic woman in an autistic group. I couldn’t understand people in an autistic support group having so little regard for common autistic strengths and common autistic challenges. Overwhelm and burnout are serious issues, and some people don’t survive. I’ve worked on many projects before and never had an experience like that.  I still don’t understand it.

Accepting an autistic person requires you to accept all their autistic-related differences - even those you find inconvenient.

That completed my involvement in the proposal. I wrote a bit about what happened after that and that’s posted in the Autistic Burnout thread in the forum. 

I just wanted to add a bit more to the mission statement and clarify what I was saying above.

The overall mandate/mission of PEI Autistic Adults is to be a community of autistic adults and autistic seniors...to share, accept, and support each other with a bit of celebration and promotion of the positive aspects of autism. With our non-profit, we will promote the acceptance and consideration of autistic people in all areas of society and contribute to autistic people having an equal opportunity to achieve and maintain the best possible well-being throughout their lifetime.

The first sentence is from our existing mandate and the second sentence covers awareness, acceptance, and advocacy from two angles - society's awareness & acceptance of us and our awareness & acceptance of ourselves. The first part would require programs promoting acceptance and consideration for the people who deal with groups of people in any capacity such as employers, medical services, police services, senior and assisted living facilities, etc., and educational advertising campaigns to deal with the stigma and lack of acceptance from the general public.

For "our awareness & acceptance of ourselves": autistic people frequently develop depression, anxiety, social anxiety and other conditions from trying to exist in a world that isn't designed for them. Few autistic people would be described as having good mental health, high life satisfaction, a sense of meaning or purpose, and the ability to manage stress, which we deserve like everyone else. Listening to the podcast Jane shared recently (the trouble with Temple) brought home to me that any therapy offered to an autistic individual seems to focus on creating an acceptable version of yourself so you can get a job or education instead of how to be the best version of yourself which is the type of therapy offered to non-autistic people. Particularly when the current programs to 'fix' autistic people so they can function better for the capitalist society can cause mental health issues. I believe people with well-being as described above will contribute positively to society in their own ways.

I recently saw this https://www.cbc.ca/news/canada/prince-edward-island/pei-artists-well-being-1.6842720 regarding Creative P.E.I. receiving a three-year grant for $287,550 from the P.E.I. Alliance for Mental Well-Being to hire peer-support workers and create an accessible and affordable counselling service that caters specifically to Island artists. I would like us to create and get funding for something like that for autistic adults and autistic seniors on PEI. I think there would be a reciprocal benefit to the gov't because people with good mental health, high life satisfaction, a sense of meaning or purpose, and the ability to manage stress can get their own jobs, start their own businesses, be happy in retirement, develop fewer physical/mental health issues, and overall cost the gov't less money.

Hopefully, that clarifies things somewhat but I'd still really like some feedback, suggestions, editing, rewrites etc because this is just a draft out of my head and I know everyone else has much to contribute to it. Comments would be great even if you're not in the non-profit group.

Is this the best email address to send my draft to? peiautisticadults@gmail.com

I should have mentioned, if anyone else would like to be involved please let me know.