What Being a Mom to an Autistic Child is Really Like

What is it like being an autism mom? The ups, the downs, and the emotional struggle.

Being an autism mom is not easy. I think people who don't know much about autism assume it's hard, but they don't really know why it's hard. It's hard not because having an autistic child is the burden that most people believe it to be.  It's hard because no parent wants to see their child struggle. Watching my child struggle to communicate is especially painful.  He has two words: "go" and "pad" for iPad.  There are times, too, when my son just looks at me, really looks at me,  and after a long pause, he says "pad".  I feel, in those moments, that there is so much more he wants to say, but he is limited to a single word. That is painful, and that, for me, is what makes being an autism mom hard, and I doubt that that is a reason that most people would expect.  

What fears do you face as you raise your child?

I am terrified of what life is going to be like for my son when he reaches adulthood. When he reaches 18, I'll be nearly 60. How long can my husband and I continue taking care of him?  What's going to happen to him after we're gone? The question of what will happen to him after we're gone is almost too terrifying to even consider, so I don't. I will one day, but right now, I just want to focus on getting through the summer holidays!

What do you wish other moms knew about what you go through?

I wish other moms would recognise that what autism moms go through with their children is very different from what they go through. Other moms, who don't have autistic children, will try to relate by saying "Oh my child does that, too". For instance, "My child is also a picky eater," or "My child also has meltdowns." No.  It's not the same. Those statements, while meant to help, undermine how challenging the reality of raising an autistic child can be. My child is a picky eater, but many of the foods he rejects are based not only upon taste, but texture, due to his pronounced sensory issues. My child has meltdowns almost every day, and they're not the same as tantrums--they're not in response to him not getting his way. They are meltdowns, not tantrums, and they can happen anytime and anywhere, sometimes without warning or without an observable cause. These meltdowns can last anywhere from a few minutes to an hour, and they may involve self-injury. I doubt that this is what most parents are referring to when referencing a meltdown. I'm not suggesting that other moms don't have their challenges, but they're different challenges, and for me, I would prefer that other moms empathise, or listen without judgement, rather than try and relate. Raising an autistic child is one of those things where unless you've lived it, you will never truly understand it.

Do you have other autism mommies who have inspired you?

The autism mommies I know inspire me every day. These are moms whose love for their children is active, not passive. They have to routinely fight for their children, and they're exhausted. They're sleep deprived, lacking respite and resources, and yet they never give up. They care for their children tirelessly and often in isolation, without any help. I admire their unceasing love for their children, their tenacity, their determination, and their ability, in spite of it all, to maintain a sense of humor! I feel grateful for the friendships that I have made in response to my son's autism--those friendships are among some of the best things to have come from his diagnosis.