guest post by Anne Wahlgren
The relief I felt was indescribable.
In those hard and uncertain days after my daughter’s autism diagnosis, I longed to know someone understood.
Searching on Facebook, I found an autism moms group in my local area. Scrolling through posts and supportive comments gave me an immediate sense of community. I’d found a group of women who deeply understood the difficulties that come post-diagnosis.
It was a place where I could get information about local services. But more importantly, I could connect with other moms. It was a place where I wouldn’t be judged for my child’s behaviors.
Until it wasn’t.
And like so many other places on the Internet, it became a place of judgment and shame.
Realities of Autism
If you ask autistic adults, they’ll agree there are two things that are true about autism:
It’s a medical disability that brings difficulties around personal safety, daily life, and communication. Often it carries other related health concerns.
It’s also a beautiful neurodiversity that needs widespread acceptance.
Autistic adults have confirmed this for me. They struggle with the push for acceptance of the neurodiversity and the pull from the medical characteristics.
While autism is not an illness like diabetes, it requires support. For my child, it means a variety of specialist doctors.
It means occupational and speech therapists and family therapy. Several times a year, we see specialists at the children’s hospital.
Autism impacts the entire family – that’s the reality. Denying that it’s a disability does not advance the need for acceptance.
Coping with an Autism Diagnosis
Given that autism is a medical disability, it is often diagnosed by medical providers.
They use medical terminology and can approach it more from the disability standpoint than the neurodiversity perspective. Their role is to manage the characteristics of ASD that impact daily life and the symptoms of related medical conditions.
These are most parents’ first experiences with the autism diagnosis. They bring around normal human emotions with unknown circumstances:
· Is my child going to be okay?
· Will my child become independent?
· Will my child be able to communicate in any way?
· How we will cope with this?
Medical professionals also tend to use functioning labels and person-first language. This is what new-to-diagnosis moms bring to autism mom groups.
Shaming New to Diagnosis Moms
After a year or so in the autism moms Facebook group, there was a subtle yet noticeable shift in tone.
As new moms came into the group, they were suddenly being held to the standard of needing to be allies while reeling from a diagnosis.
Moms were criticized when using functioning labels or person-first language – even though that’s all they knew.
This led to other moms feeling like they needed to apologize for having any negative emotion around their child’s diagnosis.
Seeking connection and support with others who get it was no longer acceptable. That’s a human need and I was troubled by it.
When I was called out about pointing out this shift by a group admin, they said parents should not have negative emotions about who their child is.
It was very binary thinking:
· If you express any negative emotion, you’re communicating to your child that you don’t like them. You’re ableist.
· You’re new to an autism diagnosis and have no negative emotions. You’re an ally.
That’s simply not true. Raising any child – neurotypical or neurodiverse – is an emotional process. Feeling a range of emotions about any child is normal and healthy.
There is a wide spectrum from wishing autism had a cure and didn’t exist to being sad about the difficulties your child will encounter with a medical disability and neurodiversity.
This attitude is also dangerous. It communicated to moms in the group they must suppress their own mental health by denying their emotions. This leads to poor outcomes for both parent and child.
My Turn to be Autism Mom Shamed
Finally, it was my turn to be autism mom-shamed.
I responded to a mom around a concern with her child’s behavior. She was curious about whether a certain type of therapy would work.
Within that discussion, while I supported this new mom, I gave an example of what did and didn’t work for my child. In that conversation, I was criticized for describing my daughter’s eloping as a “problem behavior.”
This same community admin told me that words matter and since all behavior is communication, I shouldn’t say it was a “problem behavior.”
At that time my daughter was having a yet-to-be-determined problem and there was a behavior associated with it (eloping). So I called it a “problem behavior.”
(We have since figured out and corrected the problem that triggered the behavior).
Instead of getting to the heart of a mom’s concern and need, other moms were fixated rigidly on language and doing things the “right and wrong way.”
Finding Support as an Autism Mom
So I learned like in many other mom groups on the internet, groups change over time. There will always be certain moms who will choose to be right over choosing to listen to understand.
Fortunately, I was able to find support beyond that regional group.
I was privately contacted by at least a dozen moms who felt the same as me. I began friendships with them outside the group.
I found a much smaller local group and I found broader groups.
Autism Mom Life is a great way to find that support as a mom. It’s a community where you can learn about advocacy and self-care without judgment.
I confidently left that group. I know who am I and what I stand for.
I grieved how it had changed but I could not condone outright or subtle shaming anyone for expressing emotions. My silence would be acceptance.
Emotions are valid; actions can be problematic.
Same for you, Mama.
You are only responsible for your own actions. You are not responsible for the emotions of others.
There are differences of opinions in the autism community around all sorts of things
You do you. You are the parent living with your child in your home. You know the related you face.
Don’t let the judgment and shame of other moms dictate your choices. Listen to autistic adult voices. But ultimately, you do you.
Anne is a former teacher and mom of three. She empowers parents to help their children learn and grow at home. You can check out her free printable resources including 10 Ways to Get Calm at PrintableParents.com or on Instagram @printableparents.
related: Letting Go of Autism Mom Guilt