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So We Got an Autism Diagnosis…Now What?
The Merriweathers on figuring out how to navigate a sea of feelings and information
Hello! I know some of you have kids in college, school, daycare, and for others, school’s not back in session yet, and some of you have fresh-born babies who aren’t going anywhere anytime soon. So I hope whatever the last few weeks have looked like for you have been…OK?
Today’s issue is a guest post by reader Emily Merriweather and her husband Logan, offering their advice on how to figure out next steps when your child receives a diagnosis of ASD. This is a good read for anyone, regardless of where your kids are neurodiversity-wise, to learn more about what type of path our compatriots are on.
So We Got an Autism Diagnosis…Now What?
Okay, so you ran the gauntlet. You tackled waitlists, assessments, screening questionnaires, referrals to specialists, or all of the above, and now your child has an Autism diagnosis. And you’re left wondering what your next steps are. The honest truth is that my partner and I can’t give you a specific answer to that question. Our answer was completely different for both of our children, and they grew up in the same home and received their Autism diagnoses only a couple of years apart.
But we can tell you what you need to do before you take your next steps: get your head right. Take time to really digest this new (or confirmed) information and make sure you’re moving forward in the best way possible.
Nothing is wrong with your child.
If you don’t have neurodiverse people in your life, we’d be willing to bet that, like us, the first time you really encountered the word “Autism” in any meaningful context was when people you know started having kids. It was probably presented as something to be avoided and spoken about only in terms of prevention or risk. Maybe the person who did the physical work of growing a new person feels like they did something wrong. They didn’t drink enough water or, just as a completely random example, they feel like they may have gone through the Taco Bell drive-thru one too many times.
So now there’s A Specialist Who Is Giving Your Child A Diagnosis, and you feel like you’ve failed. You have not failed. As the Autism Self Advocacy Network says, “Autism has always existed. Autistic people are born autistic and we will be autistic our whole lives.”
Nothing about your child has changed. Your child is still your child. A diagnosis is a label that will help you connect with services and resources. Autism is a label for a type of brain that behaves differently enough that we can codify it. That’s it.
No one knows what your child’s life will look like. When our son “failed” his 18-month Autism screener, our pediatrician told us that he may never speak. Less than a month later, he was arranging pieces of a banana on his plate and quietly counted them all the way up to ten. If he was neurotypical, would the doctor have made such a big swing of a prediction? Would we have believed it? Doubtful.
The only thing we know for sure, that we plan for, is that our Autistic children will be Autistic adults one day. Their growth and regressions and talents do not follow the books on raising a child your mother-in-law handed you or the chart in your pediatrician’s new parent folder. Because your family is on a different journey, be prepared for an influx of unsolicited advice.
Well-meaning parents of neurotypical kids will say things like, “Use a firm tone when it is time for bed,” or, “Tell him that screaming in the park means he will not get fro-yo later.” You have three good options:
Nod politely while you delete this person’s number from your phone.
Laugh loudly until they back awkwardly away to another county.
Pull your hair in front of your face like The Grudge and crawl up the nearest wall and onto the ceiling. Moaning or insectile clicking noises are optional.
You can also use a mantra that we find helpful, cribbed from the TikTok comments of a female comedian who was being offered advice on joke construction: “I’m not seeking feedback at this time.”
Respect your child’s privacy.
Most likely Evil Witches don’t need to hear this, but just in case: An Autistic child is not a thing that happened to YOU. Your Autistic child is not your new personality. You are not a HashtagAutismMomma. A public listing of your child’s challenges and perceived shortcomings to every stranger at the playground or grocery store is not interesting to the stranger and damaging to your child, who is three feet away. But you also need to be prepared to meet those parents and course-correct as gently as you choose. Venting about kids is perfectly normal for all parents, but some people seem to be training for the pathologizing Olympics. What’s worked for us is focusing on the unique aspects of our kids instead of engaging in complaints about them. They’re funny, they love numbers, and they can eat an impressive amount of bagels for someone their size. They’re human beings, and we talk about them as such.
Remember that any negative feelings you have about the diagnosis are valid, but they will most likely change as you learn and grow. Process these feelings relatively privately to avoid later regret. Don’t commit them to the internet. Don’t call up your gossipy aunt. Find some witchy friends who have Autistic kids, if possible, or a support group, preferably one with a confidentiality agreement, where you can vent safely.
Listen! Listen to the other parents and caregivers around you. Hearing the stories and trials of other people can help put your own difficulties into real perspective. Not to minimize them but to give you a genuine sense of perspective.
Create a bubble.
Your biggest job is to make space for your children. Stretch your arms out wide, do not apologize for them, and make space. Let them be themselves, advocate, open doors into spaces they are interested in and let them run through. If you shrink in embarrassment in public settings and cringe in the presence of adults who find Autistic behavior uncomfortable, your kid will notice eventually.
When creating your bubble, it is important to note that there is no automatic entrance. Grandparents, the doctor who gave you the diagnosis, maybe not even your partner. As well-meaning as all of these people may be, listen carefully to the goals they lay out for your child. Do they align with the path you and your other professional bubble residents have set for your child?
The ways to support, repress, mask, pathologize, or assist an autistic child vary wildly, and all of the paths are couched in the language of support and doing what’s best for your child. It can be confusing. ABA is the most frequently recommended therapy for Autistic children (and most frequently covered by insurance), but Autistic adults have advocated against it as abusive, even as ABA has started to try to rebrand itself as neurodiversity-affirming. We’ve opted not to seek ABA care because we feel it’s harmful to emphasize compliance with children who are already vulnerable. But ABA is almost always strongly recommended when our children see a new provider. It’s our job to push back and hold the bubble boundaries firm.
Sensory input can feel very different to a neurodiverse brain. Some sensations may feel not as intense; some may seem overwhelming. What does it look like when your kid needs more sensory input? What does it look like when they’re overwhelmed? Do they put their hands over their ears? Are they running wind sprints in the hallway? Are there specific kinds of movement they seek out, like pushing heavy objects or hanging upside down from the couch? Paying close attention to behavior can help you understand things your kiddos may not be able to communicate in words.
Eventually, when you learn more and have the mental space, start to seek out the voices of #ActuallyAutistic adults. Learn more about the disability community and the rights they’re currently fighting for. Read about the social model of disability, which is an incredibly useful lens for looking at the world: individuals are who they are, and society needs to make adjustments to accommodate them.
Finally, make sure you’re taking care of yourself. Young children are often an all-consuming responsibility, and Autistic kiddos can be exponentially more demanding. If you have a partner, don’t feel like taking time for yourself is stranding them. We have found it helpful to do genuinely restorative things like taking a good book to get a cup of coffee, having porch cocktails with a neighbor, taking yourself to a movie, etc. Make your time away counts for your mental health. If you don’t have a partner, start building a community for yourself, whether that looks like a babysitter, a parent’s group, or your chosen family. Without time for you, you will burn out. Ask us how we know! Finding a balance between caretaking and self-care is an ongoing practice that will take adjustments as everyone grows together.
Emily and Logan Merriweather live in Olympia, Washington with two bright, funny children. Emily is a poet, personal essayist, and currently pursuing her second masters in early childhood education. Logan is a writer who sometimes likes writing and a stay-at-home parent who usually likes parenting. Their children named a carton of chocolate almond milk Roger this morning and set it amongst their stuffed animals.
I hope you enjoyed this free-to-all edition of Evil Witches, a newsletter for people who happen to be mothers. It’s written and edited by Claire Zulkey, but it’s a group effort, really. Feel free to forward this to anyone you think may find it useful.
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One Witchy Thing
From a friend whose spouse is in school along with their kids: