Before You Start Grieving for Your Autistic Child…

Three years ago, I was the parent of a newly diagnosed autistic child. When the doctor first gave me his diagnosis, a myriad of emotions swirled though my mind, through my heart… throughout my entire body.

I was too busy and overwhelmed at the time to put my finger on exactly what those feelings were. His twin brother was diagnosed a bit later, so you can imagine just how flustered I was!


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 of the members, 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” organization 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.

jon adams
Jon Adams- Artist, Advocate, and Poet

I could probably write ten different articles on how this type of language is damaging to the autism community, to our children, and to 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

Understanding the Spectrum – A Comic Strip by Rebecca Burgess

Autism Inclusivity Facebook Group

ASAN Online Book: Welcome to the Autistic Community

A book list compiled in my no-pressure book club on Facebook.

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 harsh! It can cause panic attacks and depression. 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 local resources through your community services board or health department. Call your health insurance case worker to help guide you through applying for resources. My local Autism Society of America hosts workshops on 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. Talk with someone about how you’re feeling. I’m a huge proponent of counseling. Everyone deserves a great therapist.

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 we 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 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 may 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.


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11 Replies to “Before You Start Grieving for Your Autistic Child…”

  1. Yes, I agree with this so much and wish professionals would treat parents differently at diagnosis. When my son was diagnosed I was completely shocked. I knew he had a speech delay and was an anxious child, but autism wasn’t even on my radar. The person who diagnosed him told me I was in denial (I wasn’t, I just had no idea) and claimed my son had a low IQ and didn’t understand almost any language as evidenced by his echolalia. She said I had a limited window to get him help. She painted a bleak picture. She scared the crap out of me and gave me no resources. Excuse my language, but she was also full of shit. My kid is brilliant. He has his struggles but he also has amazing strengths and there was communication and value in his echolalia. We are only a year and a half out from diagnosis and my boy has full conversations and no longer qualifies for speech. No way it could have happened that quickly for him if he wasn’t understanding anything while echolaic. Always assume competence and grief is not the right word.

    1. I’ve met a lot of echolalic kids through volunteering experiences, and every single one of them understood more than they could express and sometimes used echolalia communicatively. There’s a lot of professionals who are utterly clueless about how echolalic people communicate.

  2. I really loved this article. I am the mother of an 8 year old boy with autism. I look back on how frantic I was with trying to “heal” him when he was first diagnosed. The speech pathologist who initially suggested that I have him evaluated also put in her notes that she suspected that he was very low functioning. This evaluation of my child whom she only met on 3 occasions really threw me for a loop. But over the years I have reassessed the emotions that I initially felt and most of my emotions were grounded in fear. Now, 5 years later, my son brings so much joy and happiness to my life that I can only look back and laugh. He has actually become quite the comedian. Through it all I have realized that I can’t force him into a box of my own expectations of what his life should be. I must allow him to just BE and assist him when I can along the journey.

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