Megan is a mother, Aspie, and a lover of people, music, books, and writing. Megan’s blog is a creative outlet that shares her experiences with Asperger’s Syndrome, among other stories in the hopes of uplifting and starting meaningful conversation for those who seek it. This week she discussed a variety of topics including her diagnosis story, inclusion, disclosure, and supports for new mothers.
How did you become aware of your Autistic identity? What prompted you or your family to pursue a diagnosis?
When I was about 13, my mom told me. Leading up to this, my youngest sister was diagnosed with Autism at the age of 2 when I was about 10 or 11. Something was very clearly “wrong” with her. She was diagnosed at an organization that is referred to as “Regional center.” I’m not sure what it’s actually called, but there’s an organization in my general area that supports children and adults with special needs. For me, it was a bit harder for anyone to tell.
I had known I was different than the norm, but it never occurred to me that I was neurologically different. Although I struggled to gain friends and struggled in school, it wasn’t really a problem until middle school. Before then, I had holes in my education which made it hard for anyone to really see an issue. I used college level vocabulary, but couldn’t spell any of them or read them. The most any teacher tried to say was that I probably had ADD or something, which my mom got me tested for and the experts said nothing was wrong with me, so she let it go.
Anyway, in middle school, it became hard for anyone to ignore my issues any longer. I struggled to make friends and understand social norms, and I struggled to understand my teachers. In middle school, the teachers I had all seemed to have these expectations of students to be more grown up and therefore were harder on us than previous teachers, and that was very intimidating to me. Despite not doing well in school, I still was blissfully ignorant that anything was wrong. My mom was finally called into school where all my teachers complained about me to her. I’m not exactly sure everything they said, but she has mentioned to me that at some point she said something along the lines of me needing more help and assistance, and they said something like “you can’t continue to hold her hand now that she’s not a baby anymore,” and my mom said, “well, why not?” and immediately took matters into her own hands, pulling me out of school and homeschooling me.
Although my mom knew something was off about me, she wasn’t quite sure what it was either. It was only after talking to a friend of hers who also had a kid with autism who mentioned how I had autisticy traits that my mom thought to look into it more. Shortly after pulling me from school, she took me to “Regional Center,” and I was formally diagnosed with Asperger’s Syndrome, which would now probably be considered Autism Spectrum Disorder. Both me and my sister also went to UCLA for further studies as they were doing a study on girls and siblings with Autism. My mom seems to think it helped shape the current narrative in autism, but I don’t know.
Describe a time during your high school or college life where you noticed/experienced friends (or institutions) trying to be inclusive, but their efforts weren’t actually inclusive.
I was honestly too afraid to tell anyone that I had Autism. Still am, to be honest. So, I didn’t really talk openly with friends about it. The thing is, the more I think about it, I feel like me being so afraid to talk about it caused more harm than good.
Institutions are a whole other story. High school and college both had pretty decent programs to help varying levels of disability. My high school wasn’t very well funded, so it’s a miracle they actually had semi-decent programs for me, and that I had a pretty great advisor who made sure I got the education I needed. My community college had pretty good classes as well. So did my University. I went to BYU-Idaho, which had pretty great programs if you knew where to go. Although I had a great experience in high school, I’m not so sure the programs set up are able to tap into everyone’s potential. But I can’t say for sure.
It’s the community programs that I take great issue with. What has always bothered me was that there seems to be this never ending support for children with disabilities, and yet the moment they turn 21, the support drops significantly. At several points during college, my mom enrolled me in community work programs for adults with disabilities. One was an office program that I loved. I worked at the office of this day program for adults with disabilities. They even got a contract with the local hospital, and I worked in the Hospital HR department for a few months, but that program went away. The other experience I had was more common where I worked at a work program that had adults with disabilities doing janitorial services at local businesses around town. I loved the office program, but I couldn’t stand the janitorial one. There just was this weird culture of “oh look at us providing employment and independence to these people who wouldn’t be employed anywhere else,” yet there was no encouragement for any of the participants to do other things other than clean up trash. There are quite a few kids who used this janitorial program to earn easy money so they didn’t have to try harder and make something more for themselves. There were levels to this so there were employment programs in both programs I was a part of, however they focused on entry level stuff like retail.
I’d love to say it’s just the area I live in, but where my sister is it’s much the same. There is little to no community programs where they were at all after 21.
What would have made your experience in the previous question more inclusive, in your opinion?
I wish there were more opportunities for those in high school or who graduated from high school to have job experience at things other than retail and janitorial work. More like the office program I worked in. I feel like this is something that is actually a thing already. I remember being told about an institution that provided adults with disabilities job training in things like car maintenance and stuff like that. Who knows–there may be areas that do this. I just wish there were more of these types of opportunities for people.
Based on your personal experience (or the experience of others whom you have spoken with), what are some important supports that should be in place for pregnant Autistic women or new Autistic mothers?
Overall, based on the discussions I’ve had with other mom friends who are neurotypical, my experiences and worries are not that different than the average mom. The only difference that I am seeing is that Autistic mothers are more likely to get postpartum depression, which is something that can happen to any mother let alone an Autistic one. Probably not a very popular thing to say, but that’s what I’ve been seeing.
The great thing about this is that, in the US at least, there are so many programs for new moms. Lactation consultants, therapists, WIC. I can’t speak for all areas, but when I was in the hospital, because of the worry about postpartum depression in general, I left with this huge packet of resources and great encouragement to seek professional help if need be.
Again, can’t speak for all areas, but what I wish overall is that certain cultural things were changed. The most I wish for is that each medical personnel be schooled in proper communication habits and tactics. For one thing, despite me having a pretty good overall experience with my OB and the nurses at the hospital, I know too many mothers in general who haven’t had that experience. I know for a fact based on all the moms I’ve talked to, each of them has had at least one experience where either the medical professionals didn’t do a good job of advising them, or they were talked down to and ignored. I don’t know any Autistics personally who have given birth, but I have a fear that this could be exacerbated with that.
The other thing I wish is for more of a culture of better self care and love for mothers–period. I know technically it has become this thing that mothers all know to do, but what seems to be the overall culture is that moms know they have to do this, but don’t for … reasons. This has been the most confusing thing being an Autistic mother. Especially since I’m a rule follower and endeavor to actually do it, because most moms don’t, I’m left feeling like I’m not being a good mother.
How do you handle disclosure (to friends, employers, teachers, etc.)?
I’ve found that Autism is a buzzword that invites a specific image in people’s heads of what autism is. So, it’s hard for me to feel comfortable talking to people about it. I am one, it’s just I have always worried about how people will look at me afterwards. Will they see me or are they seeing that label written on my forehead? I’m sure I’m being really paranoid about it, but because of past elementary and middle school experiences, I’m scared. lol. I will admit that there are some instances that it’s important to disclose this part of myself.
Basically every teacher I had in middle school and high school all knew. I honestly didn’t think to tell any of my teachers in college, but I wish I did.
With employment, I used to say “I have Asperger’s Syndrome,” however, I was finding that because of the stereotypes people had in their head, I wouldn’t get hired. So, I decided instead of just saying “I have Autism,” it was better to go in full detail about all the things I struggle with as well as the strengths I have. For example, “I have a hard time reading social cues and sometimes require more direction, however, I will make sure to ask questions if need be.”
I don’t really tell friends, however I found the above technique has helped me bond with neurotypical friends. It turns out they struggle with social situations too so even if I never say “I have autism,” we have bonded over any shared experiences we have had.