When I was about 12 years old, my parents brought me to a psychologist’s office so that I could be evaluated for autism. Before and during the evaluation, I had no idea what these people were testing me for, I just got to enjoy a day of fun little brain games where I didn’t have to go to school. So I didn’t fully know what it all meant until I got my evaluation back about a few months later, which concluded that I had autism, a piece of news that I refused to accept. This was because I understood how the world at large perceived autistic people as all the same, as incapable, unintelligent, and unworthy of being treated like human beings. I was so against using the autistic label to describe myself because I didn’t fully understand what it meant to be autistic, and I was so hyper-focused on how the world saw me as opposed to how I saw myself. Now that I’m in college, I’ve only been comfortable using the autistic label for a few years after doing my research and learning to embrace all of the qualities about myself that I can attribute to my autism.
What are “autism moms”?
From everything that I have seen online with regards to the parents of autistic individuals, most prominently autistic children, there is a large phenomenon of primarily mothers of autistic people being present on social media platforms such as Facebook and TikTok, and basing their entire platform on their child’s autism. Now, educating a wider audience about autism as a whole isn’t a bad thing in and of itself; we, of course, need more perspectives out there to help a wide variety of people understand what it’s like for us autistic people, because every autistic person is different and has different experiences. However, it’s how they take to social media and talk about their child. These “autism moms” will often present their child’s autism as a burden to themselves and their families, talk about it in a way that centers themselves instead of their children as if they are a victim to autism, and sometimes will even film their children having meltdowns and post the videos to social media. The common theme is that they will act as a spokesperson for their child, wanting to have some form of control over them, even as they become adults.
One of the primary examples of an “autism mom” that pops into my head is Christine Romeo, who is the mother of Abbey Romeo, an autistic woman who is most well-known for her appearance on Netflix’s Love on the Spectrum. I was particularly drawn to their mother-daughter dynamic when I watched their appearance on Jubilee’s Middle Ground series, which brought together autistic and neurotypical people to talk about their shared and different experiences.
Throughout the whole video, I constantly saw instances of Christine attempting to speak on behalf of Abbey, acting as an authority for her in a way. I also noticed times when Abbey wanted to step forward for a prompt she felt like she agreed with, but then would look back at her mom for her approval, specifically for the first prompt, which was “I find the word ‘disabled’ offensive.” Abbey was about to step forward, and then you can hear Christine say to her, “I think you should go back there,” essentially coaching her and not letting her have her own voice. The whole time, I wished that Abbey could have come to the debate by herself and was able to fully speak for herself without worrying about whether her mom would allow her to say what she wanted to say. Christine also used very dismissive language to talk about people who are self-diagnosed, claiming that they aren’t really autistic and somehow invalidate the experiences of people like Abbey, who does seem to have slightly higher support needs compared to others.
Why “autism Moms” harm the autistic community
As someone who was diagnosed with autism a little later in my life than most people, I have had less time to come to terms with my diagnosis and how it helps me understand how my brain works, most of it being self-inflicted since I wanted nothing to do with the autism label for a very long time. However, as someone with low support needs, I find that parents like Christine Romeo often end up doing more harm to the autistic community in their attempts to do good. It seems to be a common theme among some of these parents that they tend to gatekeep their child’s autism, acting as if unless someone has all or most of the support needs that their child has, that they’re not really autistic or that they’re taking away from the experiences of “real” autistic people.
There’s a saying that I really like that goes “if you’ve met one autistic person, then you’ve met one autistic person,” and this basically means that all autistic people are different and have different support needs, and that no autistic person is exactly the same as another. Autism is a spectrum, and not so much a straight line per se. Every single autistic person has different support needs that can often change as they get older, including me. My having lower support needs doesn’t make me any less autistic or less valid in my diagnosis, and for Christine to basically say that because those support needs aren’t like those of her daughter Abbey’s, who spent over 15 years in speech therapy and occupational therapy, is ignorant to say the least.
What parents like Christine fail to understand is that by essentially gatekeeping their child’s autism, they are making it harder for people to reach out and advocate for a diagnosis for themselves. They also fail to understand the many reasons why one may self-diagnose, one of which is the fact that getting a psychiatric evaluation can be very expensive, and being able to get a diagnosis is a privilege that isn’t awarded to many people. The autism label has helped so many people to understand parts of their brain that they didn’t understand before, and allows them a sense of clarity when they find a label that fits them. Many of these parents see autism as a black and white situation, where you either have exactly what their child has, or you don’t have it at all, and their failure to look at the autism spectrum with the nuance that it deserves will continue to do a disservice to the autistic community.