Finding witchy resources for moms of autistic kids
No cures, no angels, no hyperbaric chambers
Q: “I was hoping you could ask people parenting neurodiverse kids how on earth they find witchy support in navigating everything. My kid is autistic and speech delayed and I could really use help navigating crap from ‘been there’ folks. How do you find support groups that aren’t filled with vaccine crazies and people who want a ‘cure’ (no thank you, he’s perfect) and people who are going to start talking about blessings and ‘little angels’ and shit.
He’s him, he’s great, he just needs support to thrive just like he would if he were diabetic or had a physical disability (and if you don’t think he can be nefarious and manipulative just because he’s autistic you are an idiot). *I* need to know I’m not missing giant swaths of support options or the like and I’d like someone to laugh with about this so I cry less. Do I really have to join Facebook and try randomly? Please no?”
Another witch asked something a little similar:
“There is so much info out there but a lot of it is ‘your child can probably still have a shot at a happy life maybe’ which is certainly not the vibe I’m looking for. I’d like to understand autism better, but really I’m looking for a way he can understand himself better.”
I asked some witchy friends who are raising or who teach autistic children for their advice on finding the right resources for you. As a style note, I’m still learning my way when it comes to preferred terminology for neurodiverse folks: I shared advice here as it was shared with me and maintained the preferred style of each witch who helped me.
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“First, my 10 year old daughter has a double diagnosis of ADHD and Autism. Double diagnoses are common.
Second, my child is Autistic, not ‘has’ or ‘suffers from’ Autism but Autistic. We own it, she owns it, and we are open about it. Not that we are shouting it from the rafters but It comes up in conversation. She is pretty ‘high functioning’ (which is a term that is not acceptable in certain Autism circles because many in the community feel like it promotes discrimination) thus she is able to live in neurotypical circles. Autistic people have always lived among the neurotypical: it’s time to make them visible.
Communication and social skills are our issues. At age four she was diagnosed with receptive and expressive language disorder. Because of this, the therapies she received were the same as those who are not Autistic but with the same diagnosis. There was individual language therapy from age 4 to 7 where worked on vocabulary and use of language. She also was also in social group therapy from age 4 to 8 which helped her with her social skills and language.
Our school helped out tremendously, although she was not diagnosed with Autism until age 9 (that’s a whole other rant). The language disorder diagnosis at age 4 yielded an IEP, which was implemented very effectively by her teachers; it was stuff they did anyway.) It helped that she is in a private school that has small classes and teachers with specialized training in reading and special education. She also got extra help from the reading specialist, and our school allowed for an outside SLP to come in during the day.
When it comes to the day-to-day, we try really hard to establish a routine. She has a binder that has a daily checklist of all the things she has to do in the morning, afternoon, and evening. Today she is a fairly week adjusted 10-year-old. Many people find her charming and quirky. Also, she is a very social person, she has a small group of friends. She does well in school except for reading comprehension but given her issues with nuance and abstract thinking, it's not a surprise. She does well in subjects that are logical and linear.
She is currently in individual therapy to help with her social skills and communication. We are no longer in group therapy, but she does attend a “Zen” lunch group at school and in the summer she is in performing arts camps because they require lots of dialogue and communication.
Things that I have learned:
- ABA [applied behavior therapy] therapy is a NO! It’s behavior modification that focuses on punishment to get desired behaviors.
- The autism community is very split on terminology. There are people who think the whole puzzle piece thing is offensive.
- Jewish Child and Family Service in Chicago, where I live, has EXCELLENT support services that are affordable.
- When I was on Facebook, I belonged to a group called Autism Inclusivity. It was started by people who are actually Autistic. They can be a bit militant, but in a way that is not too cringy.
- There is an interesting book called Unstrange Minds by Roy Richard Grinker. He is an anthropologist who started to research Autism after his daughter was diagnosed in the mid-90s. It was an interesting read because he writes about what his family had to go through at a time when Autism research and services were not so readily available. If not anything, it will make you thankful for what is available now. He is regularly harassed by the anti-vaxx crazies, so he must be on to something.”
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“My most generic answer, as an educator, would be to start with your school district and see if the district (or the special education cooperative many districts are a part of) has a parent group for kids with disabilities. There could definitely be goofballs in there, but there are also frequent normies who are just looking for other people who have kids with similar profiles. Lots of doctor names and therapist names get exchanged at our parent meetings, and I've definitely seen some parent friendships develop over the years.
If your kid is already in any therapy or service at a place that she likes, ask that clinic or professional if they have ever considered starting a parent group or even creating an opt-in parent email list or something. That's typically more successful, because you won’t find anti-vaxxers at a clinic with a vaccine mandate, and you won't find ‘CURE MY KID'S AUTISM WITH A HYPERBARIC CHAMBER TREATMENT’ at a clinic that runs a social language camp for autistic kids.
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“I’m not raising autistic kids, but I've found the Autistic Self Advocacy Network to be really paradigm-shifting, professionally. I think there’s a lot of ‘autism mom’ messiness on the internet, and it's been really eye opening to hear from actual autistic people about what they feel, experience, need, want, etc.”
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“A local mom got fed up and started a group for autistic kids and their families to hang out and do fun social events, and that has been so awesome. It’s nice being able to go with other families to the zoo or ice skating and know that if your kid spends the entire time opening and closing the gate or has a total meltdown, nobody there will bat an eye.
Also, the first comment made me smile because I remember explaining very earnestly to my son’s preschool teacher that he couldn’t possibly lie, because he’s autistic. Fast forward a few years and that kid could win an Academy Award with all his nefarious and manipulative bullshit. Sorry, Mrs. Rose! He was totally lying.”
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“I might suggest avoiding Autism Speaks, which seems to be the default popular national awareness org but which highly controversial and absolutely treats autism as something that needs to be stamped out and cured. I guess the polite version of this advice is: When looking for a national group, read up on the board, follow the money, and make sure they are what they seem.”
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“I have not read this yet, but it comes highly recommended: The #ActuallyAutistic Guide to Advocacy: Step-By-Step Advice on How to Ally and Speak Up With Autistic People and the Autism Community The hashtag #actuallyautistic should lead to some good stuff that is not about ‘awareness’ or ‘overcoming; but living as an autistic person.”
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“I don’t know man, but something our old neighbor friends with autistic child said was that it was like a ray of sunshine in their lives to meet us, because we treated their kid as a kid, not as something that was broken. They were like ‘Ok, we are friends now.’ They made the effort to get our introverted butts to make plans with them and we became good friends over time. That was their survival strategy - zero in on people who treat their kid the way they wanted him to be treated and make them their friends. That and edibles.”
End credits
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The archives live here. Here are a few random ones to revisit: Ways witches remove facial hair, home ec we wish we had learned before starting a family, the tale of the human white man who suggested a mother not place her child in front of a TV while she made dinner, and ruminating about how hard it is to be a normal social human post-COVID which I ran last year and still has taught me nothing.
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I received the following from a reader--I hope it's helpful!
I work for The Arc of the United States and we have over 600 chapters throughout the country supporting people with intellectual and developmental disabilities and their families.
Each chapter comes in different shapes, sizes, and dynamics but we at the National office do a lot of collaboration with Autism Self Advocacy Network and other progressive, autistic-led groups to ensure that we are always working in collaboration with, not just for, folks with disabilities.
Please feel free to share our information if you think it may be valuable.
https://thearc.org/find-a-chapter/
https://thearcatschool.org/
https://futureplanning.thearc.org/
At the risk of sounding like a total dick, maybe you're the parent who's gonna start this thing in your area?? Maybe only one other person will come, maybe they'll suck, but odds are there are other people near you who are as balanced about all of this but, as would be expected, need some company. The times I've just gone out on a limb and raised my hand to gather a crew of outsiders haven't always been successful, but I've always been glad I tried. PS acknowledging that there should totally just be stuff like this set up and ready to keep parents from feeling isolated and we shouldn't have to do it ourselves.