The Top 5 Fears of an Autism Mom

autism autism advocacy autism mom autism parent autism parenting fears autistic parent self-advocacy

The Top 5 Fears of an Autism Mom

by Anthonette Desire MD, Internist, Blogger  

Living with autism is difficult. Being a high-functioning person with autism can be even more challenging because for many, "fitting in" is highly desired and doubly worked for yet ever so intangible.
So it is for their strongest advocate, the autism mom, the momma-bear, the warrior-mom who is steadily providing support.

And with that strong support comes our fears!

The top fear of an autism mom is a tie with the top three. They are interrelated and cannot be separated. Why? Because these fears have to do with the unknown and are related to the solitary question of "What if?"

#1. What if I die too early?

#2. What if there's not enough money?

#3. What if he or she never gains independence?

Parental death, finances and future independence are neck-and-neck and will forever be intertwined as our top 3 fears.

As moms, we all want to live forever. Maybe to protect. Maybe to see our grandchildren. Maybe because of student loans. But as autism moms, that luxury is lost to fear.

We don't get to groom them to care for us in our old age or to threaten them with our fists or fortunes. We instead fear to die too early because no one, not even us, would have pre-chosen this life.

But now that it is ours, and we have a passion for it, we don't trust that another person will feel the same, do the same, advocate the same or love our child the same, so we must will our lives into forever existence.

How sad it is when a neurotypical child, with a bright future potential, loses his or her parents and must face the world at the mercy of others' goodwill. Now, if you will replace "bright future" potential with poor, unsure or undefined. How many would happily inherit that life? That is our fear.

Raising your own child is expensive. Raising another person’s child with special needs is expensive-er! Is that even a word? Who cares? It's a reality.

We think of our pre-mature death in like fashion - someone else raising our child? That’s a sacrifice of immense proportion. And that ought to come with money. But from where? That is our fear.

So we push and we advocate and we squeeze in every possible service and we work our children doubly hard to learn, fit in, change and be "normal" all because we fear.

#4. We fear, fourth, that our child will not have friends but more so that they will be bullied or taken advantage of.

We fear that society will see a "normal-appearing" person with "abnormal" behaviors and look to chastise or imprison before accepting and making accommodations. 

#5. We fear, fifth, that our child's strong intelligence, a key feature of this diagnosis, will make him or her all too aware of the above realities such that it drives them to harm, to depression and to death.

We fear the statistical rate of suicide in the autistic population. We fear that we've dropped that ball and feared too much such that we’ve missed the part about accepting life, our child and living in the love of the moment.

We fear.

And it can drive us to excessive stressing and worrying, to trying to control things that we cannot, and to isolating ourselves because no one “gets us” anymore.

But most of all, our fears drive us to advocate because we know that it's not about us. We are simply a support system to an awesome person that has popped into our lives.

Thanks for reading "The Top 5 Fears of an Autism Mom". Do you have anything to add or share?  What are your top fears as a parent of an autistic child?

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  • Charles on

    Wonderful article! Thank you.

  • S. Armstrong on

    Amen. Well said Annie. “Fear” the big “F” in our lives rears its ugly head uninvited. We worry about loved ones, family, jobs, health, future, school, etc. However, when intertwined with “normal/expected” (if that even is correct) “worry” you have additional added to the stack, well…….
    Hats off to the moms Of autistic children who soldier on, fighting their own fears, others expectations (or lack thereof)- fighting so that their children may enjoy, benefit from all the things, experiences and joys neuro-typical children get to experience.
    Thanks Annie for sharing your thoughts and experience with us. May it lead us to be more mindful and supporting of parents with autistic children.

  • Blossette Kitson on

    This is an amazing, informative article. Well done Dr. Desire!!!

  • Melissa Weber on

    As a nurse I knew have taken care of many children and teens with autism as they emerged from anesthesia. Their awaking in strange unfamiliar surroundings, with loud beeping sounds, wires attached to them and strangers touching them, was never an easy situation for anyone involved. To compound it all once the parents were brought to the bedside there was often tension as many were divorced and were usually not in the same page. Being a parent is hard enough when you don’t have all the additional fears that come along with raising an autistic child. I commend you on your personal and professional accomplishments. Love that your so honest in your blog posts! You kids are lucky to have you :)

  • Barbara on

    What an uplifting article! A mother, friend, wife, doctor, author and the challenge of raising an autism child. You are doing it. I salute you for all of your dedication and making others who may not know that being autism may be different but they are real people with hearts and feelings and intelligent beings.



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