“We can’t be friends anymore. You’ve become ‘That mom.’
‘That mom.’ That’s a tough pill to swallow. A hard thing to hear. Until you realize that maybe being ‘that mom’ Is the kind of mom who makes ‘that kid’s’ life more meaningful. Full of value and acceptance. Who changes the community or even the world’s perspective? Who advocates and who will shout from the rooftop to change people’s perception of ‘that’ kid?
When I first started to really figure out that an autism diagnosis was on the horizon for our family, I received a few comments from acquaintances.
‘Are you sure you want to move forward with testing for that diagnosis? That means you/your child would have that label/diagnosis for the rest of her life!!’
‘I hope you don’t become ‘that mom.’
‘Goodness I’m so very sorry. How disappointing.’
These statements aren’t helpful. They do no good. Do we really want to hide our differences? Do we want to continue to live in a bubble of shame, an ableist community that continues to pride themselves in what a perfect person should be? What exactly does a perfect person act like?
I certainly don’t. Let’s talk about the ‘diagnosis.‘ Ok. It can be such a triggering word. There’s so much negative connotation behind the meaning of the word: autism. Different. Weird. Not like the rest of us. Scary. Damaged.
But really. It doesn’t mean any of that. Yes, a diagnosis of autism is forever. But, get this, it’s a super fun fact. Autism IS forever. Shocking, I know. That diagnosis will help a person get accommodations and services to make their lives easier. Can an autistic individual survive in an ableist world without a diagnosis? Sure. Of course. We wouldn’t be here if we couldn’t survive. Genetics play such a huge role in neurodiversity individuals. But statistics show that there’s a high suicide rate of autistics. In fact, ‘A study found that the risk of death by suicide was seven times higher in people with autism than in the general population in Sweden.’ Bullying can play a role in this. Or autistics have a higher risk of mental health disorders. They also have a higher risk of unemployment. And studies are finding more people are autistic then we ever knew. That we may have missed so many adults who meet the criteria. So, autistics who aren’t diagnosed may not be getting the right kind of help. Or any help at all. They may not have known why they were different from others (I didn’t. I thought everyone felt/thought like me). Why they struggled so much. Why so many aspects of their lives didn’t make sense.
An autism diagnosis shouldn’t be a bad thing. You don’t grow out of a neurological disorder. You don’t grow out of being autistic. Why are people so scared of the word? Because that’s what we’ve grown up to know. Because anything different is weird. Which is why, this brings me to the next statement, I’m proud to be ‘that mom.’
I have this strange ability to not be embarrassed by much. I am a very open book. Which is why I’ve decided I can be ‘that mom.’ I’m the perfect ‘that mom.’ I can help create a world where differences are celebrated. I want to do my part to ensure my children live in a more accepting society then generations past.
What that person may have meant was the ‘autism mom.’ I’ve learned that there are many subcultures under the umbrella of disabilities. It’s a whole new world. With a whole new language. What most disabled or #actually autistic adults hate is the moms (parents) who make themselves out to be a martyr. Who show their children’s most private struggles? Who video tape their children having meltdowns. Who portray themselves to be doing good but don’t actually stop to listen to those who actually have the diagnosis? Because in their eyes, they aren’t qualified enough. Or smart enough. Or they ‘don’t have the same ‘functioning label’ so they don’t get it.’ Or maybe they aren’t valued as actual individuals with things to say that are important. They usually mean well, but in reality, they tend to be doing more harm to the autistic community.
I asked a group of autistic individuals what it means to be an ‘autism mom.’ Here is what was said.
‘In some circles it’s the Moms that grieve the diagnosis and blog and film meltdowns and say oh woe is, me my child has Autism… basically making it all about themselves and essentially ignoring the impact of their blogs, posts, and videos on their child.’
‘Autism mom often refers to those who see themselves as a victim of their child. Autistic adults remember the harm and trauma this causes them, so they try to explain but this type of person refuses to let it go to the detriment of their child. Thus, autism mom with a negative connotation. There are autistic moms who are autistic and mom and there are moms of autistic children. Autistic is the identity of the autistic, not autistic adjacent people. I’m not a Black mom because my son is Black as I am white. I’m not a queer mom because my daughter is queer because I identify differently in my sexuality. So, if autistic is not your neurology, you should not hijack it and claim it as your own.’
These are big and thought-provoking statements. Personally, I want to believe that most people only mean well. Maybe they’ve never heard this point of view. Maybe doing things the way they think works, works best for them. And I do understand that. And I do acknowledge that. Or maybe the only thing they had at the time of a diagnosis was people telling them that they had to do a certain kind of therapy or their child will not ever ‘look normal’ or function in our society. I feel as long as they have made an informed decision, then that’s their prerogative.
Is it ok to be sad? To have anxiety, a hard time, or to grieve what you thought your child’s future was going to be? Maybe. It’s normal. But grieving isn’t what I would recommend. That’s the ‘normal’ thing because society has taught us that disabilities are scary. We have these preconceived notions in our mind of a child who listens, follows instructions, gets good grades and is nice to people. And heck. Many autistics are this. Exactly! Rule followers to an extreme even!
But really, what kid actually follows your life plan for them? And why are we sad for them? Do you think it’s not necessarily sad for your autistic child but maybe how society treats them?
Maybe that’s why I’ve become ‘that mom.’ Because as soon we started getting diagnosis’s, I reframed my thinking. My children are exactly who they are supposed to be. They are following their path, and I’m proud to be their mom. I am the exact person I’m supposed to be. It’s ok that I struggle with things others don’t. I’m not lazy. I’m not all of these things I’ve been made to feel embarrassed about. I’m autistic. I have a reason. And I couldn’t be prouder.
As a mom, I certainly have bad days. I certainly have sad moments. But when I stop to think about the reason why, it’s almost always because of society. Because of what someone said, someone is doing (or not), because the social norms that are too ridged. And they (social norms) lack depth or reason. And I hate that society thinks that everyone should conform, or they aren’t looked at to be successful.
I tell you what, some of the most successful people in this world have a disability. And that right there, rocks my socks.”
This story was submitted to Love What Matters by Tiffany Tully, 34, of Quirky.Stimmy.Cool. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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