A few months after the initial diagnosis, I found some parenting groups on Facebook filled with thousands of mothers who had been in my shoes before. I reached out in these groups for guidance and hope.
While I did find useful advice from some, there were others who told me I needed to give myself time to grieve, and mourn the loss I was feeling. Several parent bloggers I started following encouraged me to do the same.
I didn’t understand what they meant. Mourning and grieving are almost always associated with the death of a loved one. My kids are right here!
To me, grief is an all-too-familiar, unbearable heartache that grips my entire soul and doesn’t let go. Why were these parents throwing around the term so loosely?
As it turns out, many of them were actually told by their doctors that grieving is a natural and valid response to learning their child might be disabled. Even the most prominent “autism advocacy” group writes about the five stages of grief in their First 100 Day Kit.
Mourning over a disabled child, who is still very much alive, has become normalized and commonplace in our society. The process of grieving is encouraged, and dare I say, inserted in our minds from the first mention of a diagnosis.
I could probably write ten different articles on how this type of language is damaging to the autism community, to our children, and to new parents of autistic children who are just starting their journey… But for this article, I’ll stick with one topic:
I don’t believe they are accurate words to use.
NOTE: I am not telling anyone how to feel. I’m not saying that anyone’s feelings are invalid or wrong. I’m only suggesting that we start assessing the “why” behind these emotions. And maybe then, we can start reframing our conversations.
If we as parents could dig down to the root of our feelings, before someone else identifies them for us, they may sound something more like this…
1. I’m confused.
When my first was diagnosed with autism, I had no idea what “having autism” even meant. “…So yesterday, he didn’t have it, and today he does? How do we fix it so he doesn’t have it anymore?”
This sense of confusion is unfortunately pretty common. It takes a while to learn all the in’s and out’s of autism. But rest assured, you can find the answers you need by learning from autistic adults. Start reading autistic blogs and books. Join groups run by autistics. The more you absorb early on, the less confused you will feel.
In an effort to help the next parent save some time, here are a just a few of my favorite beginner resources to get started:
Jim Sinclair’s “Don’t Mourn for Us“
Facebook Group: Autism Inclusivity
A more complete list of autistic people to follow: List by Emma Dalmayne
List of autistic people of color (POV) by Autistic, Typing
Books: There are too many to mention! Feel free to join my book club on Facebook. We read books recommended by the autistic community. Every-other book we read has an autistic author.
Okay, back to our feelings…
2. I’m Overwhelmed!
Having a newly diagnosed autistic child can be very overwhelming. Hey, I’ve been there – with twins! My kids weren’t hitting their milestones on time, so I wondered what I was doing wrong. They weren’t talking yet, which led to challenging behaviors. Every daycare I called required two-year olds to be fully potty trained, so I still couldn’t work.
Being overwhelmed is a harsh feeling! It can cause panic attacks, depression, and more. But this feeling doesn’t last forever. Take it one day at a time, and don’t forget to enjoy this time with your child, because that’s what it’s all about.
Reach out for help. Find financial and other local resources through your community services board or health department. Call your health insurance case worker to help guide you through applying for resources.
I found the most help through my local Autism Society of America. They walked me through applying for Medicaid waivers, SSI, and more.
3. I’m afraid.
Worrying about the future is something I dealt with on a daily basis. What will happen when I’m no longer here to support and care for my children? Who will take care of them when I’m gone? Will they wind up in somewhere alone and abused? What if they never learn how to read, or graduate high school? What if they can’t ever find a job to support themselves? What if they never make any friends? AHHHHHH!!!!
Fear and anxiety are completely understandable. But they’re also unhelpful. They rob us of the present. They steal away the happy moments, and can lead to depression.
Keep a journal with those fears, and write down some helpful ideas along with them. Talk with someone about how you’re feeling. Now that you’re a parent of an autistic child, you’re gonna need to learn how to ask for help.
4. I’m lonely.
Loneliness and isolation are common feelings among parents of young children. If this is your first, or even second child, you may think this is completely autism-specific. It’s not.
Please know that I’m not being dismissive – I know parents of autistic children encounter situations that many parents wouldn’t easily understand. But all parenting is hard, and can be isolating at times. I’m raising four boys. In a blended family. With twins. I’ve checked a lot of boxes.
When my twins were little, getting out of the house seemed too difficult, so I stopped getting out altogether. For the first few years of their lives, we just stayed home.
I did feel lonely at times, and I missed how effortless everything used to be. But the more I sat around, the less experiences my children had, and the the fewer memories we made.
So I decided to change that for myself, and my kids. Nothing in the rule book said I had to be lonely! I found a local parenting group, and made a personal goal to get out of the house with my kids at least once a month. The more we got out, the easier it became.
You don’t have to be lonely. You just have to make the effort.
5. I’m disappointed. – The Most Important Feeling to Explore
Emotions such as grief and mourning are safe to talk about. They often come with sympathy, and they’re hardly ever challenged. But admitting that you’re disappointed about your child and their/your future… That’s something else entirely.
Having these feelings doesn’t make you a bad person. In fact, all parents experience them to some degree when their children take a course they didn’t expect. My father was disappointed when I became pregnant during college and hadn’t gotten married yet. He probably had the perfect life in mind for me – The perfect wedding, the perfect husband, the perfect 2.5 kids… Wait, that’s weird.
His disappointment was narcissistic in nature, and typical of parents everywhere. He had a vision for my future, and I messed that up. It’s a common occurrence in parenthood, but one worth noting.
But these particular feelings of disappointment – over your child’s autism diagnosis – are rooted in ableism, and you may not be ready to confront that about yourself yet. Ableism is engrained in us from the time we were kids. Our society idolizes football players and models. They belittle wheelchair users and obese people.
At the most basic level of this disappointment is a feeling that disabled children are somehow defective, or not as valuable as typically developing children. Of course, you don’t feel that way about your own child. But you may suspect that others will – because in the past you have had those same thoughts about someone else.
FYI: I will not be accepting hate mail until after the holidays. I know the truth hurts. Just sit with it for a moment.
This article is making me tired, and I’m ready to be finished. But I’ll leave you with this…
Your child is the same amazing, lovable, caring, goofy, courageous child they were before getting an autism diagnosis. You get to decide how you feel about it.
I chose happiness, and never looked back.