I Struggled As a Young Mom. I Had No Idea I Had Autism.

This story is based on an interview with the editors of The Doe. It is Part Three of a three-part series about people who got diagnosed with autism late in life, a group experts have dubbed “The Lost Generation.” Read Part One here and Part Two here.

I had a rough childhood, so I had this idea that I wanted to be a mother and take better care of my kids. My high school sweetheart and I fell in love and I ended up getting pregnant when I was 17. My mother said, “You are not raising a baby in my house.” So I moved out. My boyfriend and I lived together. I got pregnant again when I was 20 and had my second daughter.

I really, really loved being a mother. It felt like my mission in life. And the earlier stuff was great—I loved being pregnant, my births were easy, and breastfeeding was pretty easy. But later, there were certain things that were super-duper hard for me. At that point I had separated from my daughters’ father and was a single mom. I really struggled with making and keeping medical appointments for my children. I was bad at taking them to playdates and talking to the other parents; I just wanted to drop them off and go. When they would start whining at the same time, I wouldn’t be able to handle it and I’d have a total meltdown. I would be at a recital and really want to watch them and see them perform, but so many people would be there murmuring and talking and I’d want to scream and run.

It was really confusing to me. I’d think, I love my children so much. How can I be so good at listening to them and being on their level and making them feel loved and cooking them food and keeping them nourished—and then be so bad at certain things that are important for them to thrive? I must be a terrible mother.

But the whole time, I was struggling with sensory overwhelm and stress related to autism. And I had no idea.

I was like, “Oh my God, I'm not awful or crazy. My brain is just wired differently.”

From an early age, there were lots of signs that something was different about me. In school, I was a savant at reading and writing. Things were way too easy for me; I was bored and irritated and constantly correcting the teachers. I would get in trouble, and people would just label me as angry and gifted. I also had no idea how to keep friendships. I never fit in anywhere, and I literally ate my lunch in the bathroom. I also got misdiagnosed with bipolar disorder when I was 16, so I attributed a lot of my struggles as a mom to “I'm bipolar, and I'm fucked up.” Or I figured things were just harder for me because I was a very young mom.

More than a decade later, when I was first getting to know my wife, I told her, “I need to be open with you about something. I have bipolar disorder.” She got this really skeptical look on her face and said, “No offense, but I don't think you do.” She’d been a social worker for 20 years, and had a lot of experience with people with severe mental illness. I started doing some research on what conditions were commonly misdiagnosed as bipolar. I also started to think about how, when I worked with people with developmental disabilities, I had a particular affinity for people with autism. I would understand their non-verbal communication. I would listen to them go on about their special interests and I wouldn't get bored. It was even a joke among my coworkers that I was the autism whisperer. They’d tease: “Are you sure you're not autistic?”

Eventually I went to my psychiatric provider and got a two-hour assessment. She diagnosed me as having autism spectrum disorder. That was six years ago.

In the short term, I felt a lot of mixed emotions. There was relief: So much made sense in retrospect. I was like, “Oh my God, I'm not awful or crazy. My brain is just wired differently.” But I also had to work through a lot of my own mental constructs around infantilizing people with autism. I mean, where I’m from in Massachusetts, they still say “retard” freely. I was crying to my wife, saying, “You’re never going to have sex with me again.” She was like, “What are you talking about?” I had to really deconstruct a lot of stigma.

Some people close to me didn’t really know how to react to my news. My mother said, "No, I don't think you are,” but she also said that when I came out as gay. My brother didn’t seem too interested. Of course my Gen Z daughters were great about it. They were like, “Congratulations, mom. This is awesome. This is going to really change your life to to have this information and this insight about yourself.”

They were right: I was able to establish a gauge within myself for the things I knew would become too much. Now that I know certain cumulative stimuli is going to fuck me up, I can plan in advance. I can go to the store early or late when there's not a lot of people. I can monitor myself in social situations and really feel okay to leave when I need to leave. I’ve worked with my therapist to have systems and plans and routines.

Two years ago, my oldest daughter got diagnosed, too. My relationship with her completely transformed. We had always been alike, so much that we would trigger each other's issues. We were very close, but we would fight and butt heads. But after we both got diagnosed, we had a common language for what we both experienced and we were able to connect on that. It’s really, really amazing. We send each other autism memes. The other day I texted her how I went to my own birthday dinner and got super-overwhelmed and had to leave—and she was like “Oh my god, I totally feel you.” 

I would not have been able to just leave like that before my diagnosis. I would have sat there at the table until I was literally in tears. I would have been drinking to mask my feeling of overwhelm. Now I don’t drink, and I can model the behavior of removing myself even if it's socially awkward. 

I think back to those early years of being a mother and I wish I had more support. It would have been great to have a social worker to help us keep track of appointments. My youngest really should have had braces, for instance. She asks me now, “Was it just money?” And I lie and say “yes” because I don't know how to tell her that it was really because I needed help. My kids would have gotten better care. Their home life would have been more stable. There would have been fewer "bad days” and more “good days.” My older daughter could have gotten diagnosed way earlier if somebody was keeping an eye on us and noticing the signs. But she was a little kid in the late ‘90s, early 2000s. Little girls weren't getting looked at for autism. And neither were grown women.