Sharing Your Diagnosis With Family: A Cautionary Tale, Part 1

I need to get something out of my head so that my brain stops chewing on it. I want to be done with all of this so that I can move on and celebrate my family’s new chapter.

This is the first in a multi part story. It is long but everything here is true. I am referring to everyone, other than myself and my husband, by their initial.

If people wanted you to write warmly about them, they should have behaved better. -Anne Lamott

Around the beginning of the year my husband, Dave, and I realized we needed to seek understanding and support from his family, whom we live very close to, for the process we have been going through. You see our family unit, us and our two kids, had recently been diagnosed as some flavor of neurodivergent. When adults receive a late diagnosis of either ADHD or Autism there is a unique grief process that happens. We grieve for who we thought we were, for who we could have been, and for what we never were. Adults then typically go through an unmasking process, where we shed the mask of who everyone else thinks we should be and begin to honor who we actually are. There is also a unique process that happens for parents when their children are diagnosed. Parents grow increasingly protective of their children’s needs. Many ND parents strive to make sure that their children don’t have to experience the stigma and shame that they experienced growing up, and are likely still experiencing.

We realized that while going through this process we had inadvertently isolated ourselves. We thought we had done this to ourselves. We had pulled back on some family functions in order to protect our peace. If you are also ND you know that activities with lots of moving parts are especially draining for the brains of ADHD/Autistic people. For those not already up to speed, our brains have a harder time filtering out the stimuli that a neurotypical brain would ordinarily ignore. We had been giving ourselves the freedom to decline invitations when we weren’t feeling up for something, and not initiating as much in spaces or with people that did not feel safe for our needs. For instance declining invitations to family dinners when we’ve had a busy week. Or deciding to stay home Christmas Day so that we could relax and our kids would not be pulled away from their new presents. Limiting the amount of time spent doing things we knew were taxing for us. 

Months prior, when we all first received an ADHD diagnosis, we did share, enthusiastically. But it was not well received by some. We heard dismissive phrases like: 

“But you are still you.” Implying that this doesn’t change anything. 

“Don’t you want to talk about something else?” Well this life altering diagnosis feels pretty all consuming, especially when it’s every person in my household. And it’s genetic, so there’s a good chance you share some of these genes.. 

“I wouldn’t go talk to a doctor (about a diagnosis) unless someone told me there was something wrong.” There isn’t anything wrong with me or my children.

In response to these and others we became very guarded. We limited how often we talked about ADHD or Autism to avoid the shaming or dismissive comments. We knew these moments were born out of ignorance of the topic, but we felt that it was not our job to educate people that would not make the effort on their own. Especially when we were very new to our understanding of it all. We were also feeling pretty drained by the process we were going through and by all of the life stuff we had going on; my Dave’s work, both of our volunteer work, our children’s school and activities, selling our house, and more.  We just did not have it in us to do this for them. Especially after we received the Autism diagnoses.

This process can be pretty lonely. I have been able to share with a couple friends. My family, the ones I am connected with, were generally receptive and even curious. Dave and I understood that some people just weren’t able to understand, and that others were not “safe” to talk with until we felt more comfortable in our knowledge.

Because we had been so careful with our time we noticed that there were family interactions we were missing. We live so close to most of my husband’s family that it began to feel hurtful to not receive an invitation to things, even if we knew we wouldn’t be able to attend. It’s not like we assumed that we would get an invitation to every little thing that the family was doing. It was becoming so frequent that we wondered if we were purposely being left out. We were finding out about things after the fact, through the family text thread or through people outside of the family. One of the moments that felt pretty hurtful was when an acquaintance made a comment to my daughter about a trip that two sets of her cousins were on that we knew nothing about. “I saw your cousins having so much fun in the snow.” 

We decided we had to take some ownership over the position we were in. Though we know now that the isolation we were feeling had less to do with us than it did with my Dave’s family. We knew that nothing would improve if we didn’t try something. Oh boy did we try, probably for far longer than was warranted.

Dave, at the advice of our therapists, was to lead the conversations with his family about Autism & ADHD, from his perspective. He started with his sister M, who I was doing volunteer work with and saw frequently. She and I were Girl Scout leaders of our daughters’ troop. When he called her, “Hey you’ve probably noticed that we have pulled back from family functions…” the conversation quickly turned into her venting about me. She actually told him not to say anything to me. This call lasted more than an hour. She was trying to convince him that I was mean, told her brother that “actions have consequences”, said I was uncooperative, that my tone was condescending. Complaints about our tones are an almost universal thing for autistic people.

When talking about this with a friend she was shocked to hear someone thought I was uncooperative. She said I was one of the most flexible people she had met. Much of M’s complaints could be attributed to my autism, and are more likely due to her insecurities. When Dave pushed M she admitted that she had never communicated or addressed anything with me. How can I know that I’ve offended someone if I don’t ever hear about it? I can’t apologize for something I wasn’t aware of.

For transparency, I had recently had to be very firm in an email with my SIL M’s friend who was the troop’s current cookie manager. She wasn’t doing her job very well, ignoring my requests, was not communicating clearly to me or to the parents, began to get passive aggressive with me and had brought up my personal life when it was not relevant to the situation. With the troop on the hook for more than $10,000 and counting I was concerned when after weeks of back and forth she was not cooperating. Her response to my firmness  was to quit the role of cookie manager. Now I had a lot of unexpected work.

Months prior I had stated to them both, very clearly, that I am a direct and literal person and that I would appreciate them seeking clarity instead of assuming my intentions. This was in response to them both assuming that I was taking something away from the girls, when I was actually seeking consistency and trying to more closely follow the rules we had to follow for Girl Scouts. So for there to be a lack of clarity and more assumptions made I was very frustrated. For what it’s worth I shared with Dave what I wanted to say before I sent it. I typically do this because I am frequently misunderstood and I want to make sure that I am being clear. Because I was shocked that she abruptly quit I also shared what I wrote with a couple others who all stated that I did/said nothing wrong.

After the initial call with his M, Dave had a follow up call with her to clarify some things and push back on others, his words. It was very clear that she had a narrow perspective and it would take much work for her to be able to see anything outside of herself. She and I had some upcoming troop things we both had to be at and these were very hard for me. She seemed content to pretend like everything was fine, while I struggled. How was I supposed to continue working with someone who thinks so little of me? I asked her to meet to talk about the future of the troop. My thought was that we could figure out a transition. I did not want to continue in the way we had been, but I now had much more work due to her friend quitting the cookie manager role. 

We had given M, and everyone locally, some material on autism, because not only am I autistic but so are my children. Our children will likely face similar challenges to what we were facing now and had faced in the past. These materials were not pointed at anyone directly and were meant as simply relevant information. She met with me, with Dave present, and she essentially said that she couldn’t work with me because I made her feel XYZ and that she was quitting her role as a leader, “effective immediately.” She was visibly uncomfortable and did not seem interested in talking about all the challenges she had dumped on Dave. Now, these things she said I had been making her feel, I was feeling around her at times too. But I knew that they were my feelings to work out and I did what I could to either resolve them, in myself or with her, or just deal with it. 

Even though she had said that she could continue to be at every meeting I knew that that wasn’t something I could do. She wanted to be just another parent, and I needed someone I could work with and depend on. She had proven that she wasn’t that person. So even though this meant more work for me I let her know that she wasn’t needed at meetings. This meant less emotional stress for me, and I could hopefully have space to process. 

I felt very hurt by M. It was horrible knowing someone had complained at length about me to my husband about things that seemed to be years in the making, when they had made zero effort prior in finding a resolution. Also, knowing that she had essentially tried to get him to turn on me was bizarre. See, I had felt the distance between her and I for a long time, years. I had tried to bridge the gap, in multiple ways multiple times, but every effort I made did nothing, except perhaps create more distance. In retrospect, I’m sure that I could have done some things better, but I was also the only one making any effort. A theme that repeats itself in all this. How can I bridge a gap with someone that’s unwilling to work with me and would rather just pretend?

It’s weird how pretending everything is fine doesn’t really work.

During all this Dave was also having conversations with his grandmother and parents who had moved to the area recently, as well as his  other sister, A, that lives a bit further away, then later his brother G, who lives in another state. Some of these conversations I was present for, as mostly a bystander, but Dave did most of this on his own. The conversations seemed to go well with his grandmother, and we thought the same with his sister A. He said his parents did not understand and were defensive. This was made clear to me when his mother came to our house and tearfully read us a multi page letter talking about, amongst other things, how much she and my FIL had done for us. It was clear that they were not understanding their son’s perspective. Though she said that she had read all that we had given her, so we had hope that, in time, there would be some understanding and support from his parents.

I guess at this point you may be wondering what exactly were we trying to gain from all this. Well, Dave was essentially asking his family for help, something he admits he doesn’t know how to do well. We wanted to create a safe space for our family to be our Autistic selves that was free of judgment and where there was at least a basic understanding of Autism. Sadly this story doesn’t end well. It seems as if we will never have a safe space within his family. 

We had continued to feel left out of family functions and were still learning of things after the fact and/or through that family text thread. One of the things we had learned about by text was a visit by both sisters to the brother, G, who lives out of state. Happy pictures of the cousins, all nine, and all the siblings & spouses. There wasn’t even a heads up from A whom we had recently seen that they had a trip planned. While we were hurt, I was feeling especially sad for my kids who were missing out on spending time with their cousins, whom they cherish.

Now it was very clear that not only were we at odds with the one sister, but my husband and his family were being excluded, without even a heads up from the rest of them. Imagine how hurtful this all was to him. Years prior we had moved back to the States to be with our families, and so many of them are so wound up in their dysfunction to see outside of themselves. It’s so disheartening.

Dave’s brother had an upcoming visit to our area and we knew that this could be uncomfortable when around M. We had hoped that there could be some improvement so that any awkwardness be alleviated some. This visit was also something that we found out about late. I had a Girl Scout camp planned that I could not get out of. Especially as I now had no co-leader and was doing all the work myself. Work that was made harder by M’s actions, like deleting shared troop files then lying to me about it when asked. 

Dave continued to try and get his sister M to work things out with me. She had said almost nothing to me other than a few sentences and was pretending that everything was fine, when it was very clearly not. I had troop parents asking me what was going on. They could see, and I had to figure out a way to navigate this by honoring my feelings as well as M’s request to “not make a big announcement” to the troop. Dave would talk with M and she would indicate that maybe she would try, but he would come away from those conversations being the one doing the work. Like I said above, our therapists both advised us that all of this had to go through him since it was his family. I desperately wanted to do something, anything, but I held off.

This is a long tale. Stay tuned for part 2…