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  • Writer's pictureAudrey Ann Masur

What An Autism Mum Wants You to Know

“Never let them know what it cost you.” This was a message I received about writing, early on in my university years. People neither want nor need the backstory. Just write well and don’t be dramatic.

Generally, this is good advice. However, when it comes to writing as an Autism and special needs mum, I have to tell you it’s a precious and sacred topic to me, because it involves my child’s life and the everyday life experience of our family. It feels both costly and risky to write about such a vast and tender topic.

Being a mum, I’m doing what I always wanted to do, perhaps what I was made to do, but I’m not doing it in the way I expected. It’s more complicated—partly because of Autism (and highly probable ADHD) and partly because of all the voices out there. Some are saying my child’s differences are due to health choices on my part or toxins in the air, while others say I should never mention the struggles and simply celebrate instead.

Social media is a minefield when it comes to neurodiverence. There are helpful things to learn there, but mind your step. Lately I've also seen a lot of conjecture and sensational material that could harm, not help, others' understanding and acceptance of Autism families.

Like all children, my child deserves privacy. This journey as a mother involves stories not mine to freely share with the wider world. While we do have trusted family, friends and professionals in whom to confide, this sense of isolation and being misunderstood can drive a mama to feel deeply lonely, especially after moving to a new place.

My child’s various educational struggles, aggressive meltdowns, screaming due to communication issues, trouble with transitions, and impulsive/risky behavior the last few years had me looking like an exhausted, anxious mum. And you know what? That’s because I have been. But at the same time, I’ve been a deeply grateful and blessed mum doing my absolute best to keep my child alive, happy, healthy, and whole.

Goodness, I’m so proud of this little soul, and I want to parent in a way that won’t lead to resentment in the future. It’s a complicated dance that will involve a solid amount of tripping and stepping on of toes, but I hope we’ll always be side by side, connected, and ready to try again, “Five, six, seven, eight…”

What a Special Needs Mum Want You to Know

(Or at least a few things they might)

1. Sit with me on the rough days, in the complexity of my emotions; believe me when I say it’s hard.

Emoting in a safe space does not indicate a lack of appreciation for all the good in our lives as special needs mums. We know there are silver linings, for we live in their intricate framework. The clouds of emotional, mental, and physical strain have pressured me—in the best sort of way—to go to therapy and deal with really old things I’ve been pushing back for years. Categorizing things properly from the past and gaining processing tools for present and future is both exciting and steadying.

I have SO much more compassion and empathy for others. I judge a lot less these days, and sometimes I feel like I’ve been let in on a little secret. Alongside my child's challenges are unique gifts and a beautiful way of looking at the world that is incredibly valuable. We as Autism mums know this, even and especially on the hard days. And yet, we wonder if the world will recognize and cherish these gifts and understand certain behaviors, as our children will not and should not always fit the prescribed mold.

Two women in my special needs mums group agreed to answer questions about what they would like others to know and what was one practical way they would love to receive support from friends (i.e. dinner, childcare, a coffee date, an invite, a hug during a hard moment, prayer, or affirming words).

One mum replied, “What would I like others to know? That what’s going on on the surface doesn’t always reflect what’s really happening. My son may appear ‘fine’ with grandparents, in school, etc—but this masks a whole set of experiences that he suppresses in order to fit in and be accepted. Sooner or later, this will bubble over but usually when he’s in a private space.”

2. Offer words of Acceptance.

What do I most love to receive? I think affirming words of acceptance—acknowledging that I am trying my best as a parent, that there isn’t necessarily a ‘fix’ and that God is taking us on [a] journey as a family.

Another mum answered, “I think the one thing I’d like people to know is that when we are dealing with challenging behaviour it is neither my fault (through poor parenting) or my child’s fault (i.e. can’t, not won’t) and even if the way I am parenting looks different (and often counter to the commonly held beliefs about how to handle behaviour) it is the way that works best for my child.”

3. Extend invitations.

“I’d take all of the suggestions you gave for ways to receive support but if I had to say one it would probably be invitations to join people for things, and an understanding that even if 99% of the time I have to say no because I can tell it’s not going to be manageable for my child, I’d love to keep receiving the invitations because when we find that 1% moment that something works it means the world to both of us.”

4. Please don’t treat my child as a goodwill project for your child.

Gosh, I’m so thankful when others are kind, particularly in a hard moment, but my child is not an object lesson for yours. They’re not a lesson on Autism. Educating neurotypical children about neurodivergence has value, as long as we aren’t training them to see people as caricatures. Every autistic person’s strengths, challenges, personalities, and preferences can vary greatly! My child is a complete and unique person, worthy of respect and the opportunity to be a real and true friend. It might be awkward and a bit messy along the way, but friends who strive to learn, connect, and accept while also sharing their own needs and quirks with us—these people are some of life’s best treasures.

5. We are so thankful for you!

I’ll always remember those who reached out and befriended us, those who saw the good early on and spoke it into our lives. Even though people have accidentally said hurtful things while trying to be helpful, I appreciate their effort and presence in our lives, their willingness to stay nearby and learn more.

Our child’s diagnosis was not a tragedy, and I never viewed it that way. But watching the struggles and rejection, realizing life would always be more challenging for this most precious person, wrestling with how to handle the stress myself, along with the bounty of experiencing the world in a different way? It has been both heartbreaking and healing—a high-cost journey of deep joy.

If I could sum this up in a one-line letter to you, I would say:

Dear friend who walks alongside an Autism/special needs mum, you are far more valuable than you know.

*Disclaimer: Every mum (and her experience) is unique. This blog post is simply meant to help you as a friend to an Autism parent. It is not exhaustive, and of course I do not pretend to represent all Autism mothers.

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I’m Audrey Ann—a writer who treasures the gift of travel, and I’m a mama who endeavors to love where I live one playdate, grocery trip, and sunset at a time. An island girl with heartland roots, I currently live in the Cotswolds of the United Kingdom. 

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