Practical Help for Autistic Parents and Partners
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Do you have a child with autism? Are you on the verge of becoming the parent you don’t want to be because you just can’t take it anymore? Yeah, us too. And for many of us, it’s not just because of the obvious reason (our child). There’s something else going on that I don’t hear any of my mom-friends talking about but is probably the biggest reason you aren’t coping right now. Read on to find out what the real challenges are and what to do about them.
All parents have struggled with coping during the pandemic, but there are extra challenges for neurodiverse families. There’s a certain amount of talk online about how hard it is for those of us parenting a child with autism and those of us living it don’t need to be reminded. Sensory needs are difficult to meet when we are in the same small living space 24-7. Supports provided by schools, therapists, and activities are cancelled around the world. Family members who may have helped out are now quarantined in a different neighborhood or town. It’s hard to cope.
Since 80% of autism is genetic, it’s unlikely you have only one person in the family who has extra needs during this time. It’s common for autistic children to have at least one parent with autistic traits (even if they don’t meet the full criteria for diagnosis) and many people have noticed that in neurodiverse relationships (the original romantic liaison that resulted in the child with autism), there is often a highly sensitive person who is able to see the good in a neurodivergent partner. That highly sensitive person has increased needs as well.
Which means there are probably other families like ours. Two neurodivergent kids. Dad has autism. Mom is highly sensitive. Now lock us all in a small house together for several months and see what happens.
Our son is classic a sensory seeker and support seeker who tics and stims and spins and whistles. He also loves being around people even though he’s not quite sure how to interact with them. He’s like a puppy when he sees someone. PEOPLE PEOPLE PEOPLE I WANT THE PEOPLE I WANT TO BE WITH THE PEOPLE!
Our daughter is on the quiet side of sensory experiences. She will sit quietly and rub velveteen fabric or let fine sand sift through her fingers. She refuses to get out of bed in the morning until we stop her brother from whistling for a few minutes. She has no interest in socializing so her main issues isn’t that she’s locked away from other humans, it’s that she’s locked in with other humans. She has suggested that the two of us should move into an apartment together with our own bedrooms and leave the guys with the house.
Tim’s preferred coping strategy is withdrawal so he spends hours every day shut into the only bathroom. Or sorting salvaged bits of hardware in the garage. Or playing word games on his phone in some corner where no one will see him. We only have 950 square feet in our house on a small urban lot so I’m continually amazed by the fact that I can’t find him. He’s a pretty big guy and he can just disappear.
Robin is the highly sensitive one. The one who hears every noise, is bothered by clutter, and feels the emotional weight of everyone’s angst and grief and frustration. She cooks and cleans and tries to cajol the kids through their school work. She feels her skin crawl with the continual need to be “on.”
Yesterday Robin begged everyone to give her just 5 minutes and she had a cup of tea in the corner of the laundry room where we store cleaning supplies.
As the person reading this article, you are probably one of the two parents whose genetics created this child. That means that there’s a good chance you are either highly sensitive (like Robin) or have autistic traits or diagnosed autism (like Tim). Either way, you have needs that are difficult to meet right now, especially when you can’t get a break from your child who has extra needs.
Whether you are still in relationship with your child’s other parent or not, that parent is adding complexity as well. If the other parent is not involved at all, there’s a good chance you are single parenting. Bless you, we have no idea how you’re doing it. If your child’s other parent is your ex, then there’s a good chance your ex is either highly sensitive (like Robin) or has autistic traits or diagnosed autism (like Tim). Either way, your ex is going to be struggling more than average right now whether they admit it or not, and they are probably more difficult than average to deal with.
If you are together with your child’s other parent then there’s a good chance you are in our situation. Two adults with competing needs and coping strategies who are each being forced to contribute more than they feel capable of doing. Even if the load is uneven, everyone is probably being stretched beyond what feels possible.
In our house, Robin is the one who carries more of the load of the kids, housework, and mental work that goes into a family. Robin is having to do far more now than she thought she was capable of doing. But Tim, even though he doesn’t appear to be doing as much as her, is doing a proportionate amount more than he thought he could manage. Robin’s retreat into the supply corner of the laundry room? That required Tim to manage our kids alone when he was already feeling done for the day.
Remember back in the before-time (before the pandemic) when we flew on airplanes? There were people who gave you instructions about what to do in case of emergency and always included the importance of your own oxygen mask, your own life preserver, always coming first. You can’t help someone else unless you’re alive. This is an emergency. So put on your oxygen.
The way this looks in real life rather than metaphor is to be totally honest with yourself about your needs. You don’t have to be honest with anyone else. It took a few years before Robin was willing to admit that she is sensitive and high strung and it was many many years into our marriage before Tim was willing to consider that he might have autism, much less seek a diagnosis (you can read more about that here). But you know what your needs are. Time alone? Privacy in the bathroom? Enough sleep every night?
Again, be honest. It can be painful or frustrating to admit what may help your loved one the most right now. This isn’t about what you wish would help them, it’s about what actually helps.
We don’t know about you, but we went into this thinking that so much time at home would mean we would finally finish all the projects.
What are you doing to parent effectively during the pandemic? What is your oxygen? What rules are your bending? Let us know in the comments!
Did this post help you? Help out someone else and share it in your online groups or with your friends and family!