Forgive me for not yet finishing up my long-expected book, Our Autistic Home, which is still in progress at 55,000 words. In the meantime, I have had a lot of people reach out to me recently wondering what to do and where to start when they realize their children are autistic. This is not going to be a comprehensive article, and there is plenty yet to learn. But I am going to say things that hopefully will give you hope and some practical ways to connect with your child while you delve into finding local professionals and as you read up on what will help your family thrive.
Enjoy Your Child
The best thing for you and your child’s development is to find what makes them laugh or smile, what brightens their eyes with joy, and do that with them more. Back when my children were quite young and were getting their diagnoses, I remember reading through reams of medical studies and clinical data, sifting it for something that could help us. The pattern I saw there was that the best outcomes for thriving came to children who laughed (or smiled/their equivalent) with a loved one at least 15 minutes, twice a day. And ANY amount helps, so aiming for two sets of 5 minute giggles works, too. I was so exhausted those years that I would sometimes literally fall asleep standing up, but I remember the relief I had as I set out to be the biggest dork possible, making the silly noises, doing the chases with cars, making the push car they rode in “Go! Go! Go!” I had dance routines (that crossed the midline—more on that below!), movies that I would repeat and quote, a silly ventriloquist act with my husband that still makes us all snort with laughter (I would sing soprano opera arias while he, a bearded, deep-voiced man, lip synced), and hours of silly nursery rhymes, finger plays, clapping games, and parades around the house. We also undertook speech and occupational therapies and integrated communication systems and visual schedules into our daily lives and routines. Those things were also important! But what remains with us and kept us feeling safe and together in the learning were those hours of laughter.
If you’re not sure how to get your child to laugh, don’t be afraid! They’re reachable. Here are some things to try to cultivate shared joy:
- Music! If they cover their ears or seem distressed, try playing something less loud, or try something different. Maybe they will like the theme song of a movie or show. Play that movie or show, and make a production of the music they like, by adding a silly dance or (if you are able to match pitch) humming along. One of my children who was nonspeaking showed me he wanted to communicate by humming the violin solo in the Pride and Prejudice dance scene that I used to play in the background before their naps every day.
- Repeat favored media. Look, we autistic people have a lot of tolerance for repetition when we love stuff, and it isn’t something we grow out of. We will change our favorites over the years, but if you can find what we are repeating at the time and indulge it, it can be a means of connection. You don’t necessarily have to talk or make eye contact, but if you show that you are happy to have us listen to our favorite songs or watch our favorite episodes over and over, it will be a source of shared joy.
- Rolling things or moving them around can be a great source of physical humor that helps share joy. There’s something about moving an object from one place to another that most people like—think of how many hours kids back in the day would kick a rock on long walks or the huge fandoms for ball sports. We are wired to notice movement. Improvise. Maybe you notice that a sippy cup has fallen on the ground, and instead of sighing or complaining that it’s there, you say, “What’s that, sippy cup? You want to show me how to get to the sink?” Then roll it along, maybe with vrooming noises. Or you can take a truck or ball on a little tour of the house, stopping to say silly things. If you are able to crawl on the floor with a rolling object, so that you are looking up at your child, that can get their attention even more. Older kids could use rolling desk chairs with you to have chair crawls across a room. Ready, steady, go! You make a relay where people have to roll themselves to a goal.
- Narrate your life and give emotions and characters to the things around you. “What’s that, tea cup? You don’t have a British accent after all? Forgive me, milady.” Likely you or someone closely related to you are also autistic since it’s mostly heritable, so just be your compassionate-to-objects self where the kids can observe it, and narrate things in a way that makes them sound funny.
Attention is the Goal! For Connection, Communication, Learning, & Regulation
You will need to learn a lot of skills to support complex motor planning, executive functioning, communication development, and sensory regulation, but the most important thing you need is to learn how to cultivate attention. I have written about this in my books Of Such is the Kingdom: A Practical Theology of Disability (Ancient Faith, 2019) and Accessible Church School (Park End Books, 2023) and taught about it at conferences. Here I will summarize the basic order of attention and explain how to manage it.
Attention is cumulative and builds in the same order, but it happens very quickly, before you can observe behavior or think. Here’s my working Order of Attention and why it matters:
Feel First: We all feel emotions and sensory safety and other input first and most strongly; these feelings determine whether and how we accomplish further levels of attention. Setting up a sensory-friendly and safe-feeling, welcoming environment is the most important part of building attention. (See more in Sensory Diets) How someone feels in a space shapes their gut feelings as well as long-term memory. Set up the room for best success, and the rest of attention is easier. On the contrary, an overwhelming, cold, unpleasant room with fluorescent lights overhead and electronic buzzes and nowhere cozy to retreat will be a place one’s attention flees.
See Second: We process visual input second, and how we feel both emotionally and otherwise physically will alter what and whether we see something. This level of attention is important for communication supports and for helping with executive functioning (ability to follow tasks, make and follow through on choices) through AAC (augmentative and alternative communication) and visual schedules.
Think Third: This is where words can be processed, and if you don’t have the earlier levels of attention, the other person cannot hear you or understand you. This is a big deal, because most people try to skip to this level and then push on and on with more and more talking or instructions, which is wholly ineffective, overwhelming, and unhelpful if you don’t have the earlier parts of attention in place.
Friendly Fourth: The highest level of attention is what we usually mean when we say, “paying attention,” but the better idea is to call this “sharing attention.” Joint attention is shared between two or more people and their topic or objects of focus. It’s where exchange of communication happens, where we learn, and where we have expressions of laughter, love, and interest. This type of attention is also called Triadic attention, and I point this out as a place where human nature is in the image of the Holy Trinity. We none of us learn or enjoy or thrive alone; humans are made for community and need each other. Keep this in mind when you get frustrated about attention signal differences in your autistic loved ones, and seek to connect rather than to judge and criticize them. YOU need connection, too.
Support Communication!
Implement AAC as early, universally, as varied, and often as possible. A lot of speech language pathologists and special educators are still running off outdated training ideas from 35 years ago when research did not exist and prejudices prevailed against visual and button and other non-speaking language supports. The data now (and for the past couple of decades) clearly shows that using visual and other augmented and alternative communication supports not only support overall communication ability that translates to other forms of communicating, but it usually increases spoken language ability without slowing down progress on speaking. In other words, old prejudices said you had to talk first no matter what, but we have known for a while that supported communication helps more across the board developmentally AND helps with talking for those who do so. This applies to all AAC. You can look up options like speech output devices filled with visual language models, LAMP (language acquisition through motor planning), communication boards, visual schedules, sign language, pictorial labels, speech output buttons around the house and for games and exchanges, augmented books, white boards where you write and draw as you talk, using captions at all times on the TV and devices, texting each other rather than only speaking, phone and tablet apps like ProLoQuo2Go, and even complicated physical language systems like PODD (which work great for kids who need a whole language they can manipulate with their hands). AAC use is a proven evidence based best practice for autism “intervention,” or support.
Learn this: “I’m afraid I must insist.” “My understanding from the research is that AAC increases overall receptive and expressive language without delaying speech.”
Where to start: You can buy some speech output buttons to use for silly purposes, for participation in household routines, or for common requests/phrases. For instance, if there’s a favorite book where you usually pause and say something, make a little button with that phrase. Next time you read, pause, then have your child push the button. Boom. Supported communication. If there’s something your child can’t reach, put a button for them to press that says, “Open, please,” or the relevant phrase. Or if you pray together as a family, record the prayers on buttons. The “Our Father” is only 20 seconds long and will fit on the standard 30 second recordable speech buttons.
Count to 20 In Your Head
Just like learn to give time to other people to process what you said before you demand a response. If you repeat before they process, they have to start over, but it’s harder because you interrupted them. Think of how hard it would be to answer a question or give a response if every time you were about to speak, someone talked over you. You would probably lose patience pretty quickly. A lot of meltdowns are because we’re basically doing that kind of interruption on our kids who are overwhelmed by other things and trying to gather their attention up to level three (think third) so they can hear us. Chill out. Breathe.
Sensory Diets
This is not about food dieting but about sensory regulation and input. The thing you need to know is that we don’t have 5 senses but 8, and two of the ones you might not think about are absolutely vital for feeling okay in the world. Those two are proprioception and vestibular senses. Balancing those soothes a lot of overwhelm. The 8th, interoception, is how we feel in our bodies (hot/cold, hungry, tired, etc) and can be really confusing for autistics. But balancing the other senses and setting up a sensory soothing environment will help with interoception, too.
Visual: Lighting, color, visual stims like colorful/transparent/sparkly/moving things. What usually helps? Warm lighting from lamps, indirect lighting, natural light, twinkle (Christmas) lights, a variety of lighting levels available, NO FLUORESCENTS (autistics can see the flicker and hear those horrible monster lights). Add warm LEDs to lamps, warm light LED light strands, interesting wall or table lamps, sunset lights, candlelight (or fake candle light). Make it possible to change the light or have a dark space for soothing.
Taste: Though we autistics don’t all register “food” as much by flavor as by predictability, it’s nice to offer different types of tastes to try sometimes, provided you always give access to preferred, or “safe” foods, AKA safefoods. If someone has preferred tastes, you don’t have to change them. Just make them available. This is not as straightforward for us, so if you want to expand food types, you might offer two pretzels of the same flavor and brand but different shapes because they might be perceived differently. Along with this, you might consider offering either cold or room temperature water as two separate options, so long as you make the preferred version always available.
Smell: You might have a loved one who gets overwhelmed by a variety of fragrances and want to theme your personal care products and household scents to categories they tolerate, such as citrus, woodsy, or floral, without mixing them in the same area. Notice if someone likes citrus and pine but not roses, for instance, and give them personal care items in preferred scents.
Textures: The sense of touch for autistic people can be hypersensitive, as we have more neurological connections as well as very few filters on how much sensory input we take in. Clothes, sheets, blankets, or other textures that feel itchy, scratchy, squeezy, or otherwise uncomfortable should be avoided as much as possible, as they can completely derail the ability to pay attention to anything else. An itchy fabric or non-preferred texture can feel as noxious as physical pain. If your child has a hard time with other textures, 100% cotton pajamas, loungewear, or light athletic gear might be helpful. Lots of autistic kids like loose-fitting clothes like large sweatshirts. Some like restrictive clothing like compression shirts. Some like both at once, such as an underlayer of tighter athletic wicking shirt with an out large, loose sweatshirt. These needs will change over time, so do your best to pick natural fabrics like cotton or silk that are soft and breathable. (It can help to search auction sites for bulk premium used children’s clothes in your child’s size, as those premium brands tend to be all cotton.) Besides clothing, provide lots of safe things to touch such as playing outside in grass, safe water areas, leaves, and pebbles, and/or include lots of sensory bins in their routine. Depending on whether your child puts everything in their mouths, you can choose sensory bin options that give access to pouring and scooping lots of different types of textures (dry rice, dry beans) or limited ones such as water-only tables or sand-only tables outside or kinetic sand tables inside.
Hearing: You’ll likely have a child with sensitive hearing. You’ll want to get some noise-dampening earmuffs, which come in child and adult sizes. A lot of autistic children need adult sizes around age 7 or 8 because we tend to have larger heads. Sensitive hearing, called hyperacusis, usually means we can hear electricity the odious sound of fluorescent lights.
Music is one of the best coordinating activities for everyone, including autistic kids. The middle of the brain, the place our complicated brains are working harder to form long chain synapses, is coordinated around both music and gross motor movements. Combine them into your learning as much as possible, by moving across spaces or just larger body movements and creating rhythms to repeat as well as melodies/harmonies as you are able.
Proprioception: This sense is based on the pressure we feel in our joints and helps us know where we are in space. Occupational therapists can help you learn some deep pressure exercises, but you can also provide this input naturally by running, jumping, carrying heavy books or laundry bins (letting kids help switch laundry between machines if they’d like), sitting behind or under couch cushions, having a pet lie on their lap, pushing and pulling toys, and playground activities like climbing. Old fashioned calisthenics also puts pressure on joints, even when modified such as with wall push-ups. If you have room for a couple of memory foam (heavy) bean bags, a lot of kids like to sit between or under them to give themselves proprioceptive input. Cubbies and nooks also help kids push themselves into spaces where they can feel their boundaries well. Make sure that you have these options available every day, and try to include activities that help your child press their joints.
Vestibular: This sense is for motion and relies not only on our inner ears but also kinesthetic input in our moving bodies. You’ll want to include dances, rocking, swinging, and playing that crossed the midline center of the body (left side from right side) as well as tipping forward and backward. These gross motor movements help build connections across the whole brain. Rocking chairs, swinging, dancing, finger plays that go from side to side, playing musical instruments, and large scale art projects engage this sensory need.
Pro Tip: Wherever you can, layer any kind of learning onto *gross motor movements* that move the whole body or large muscle sets through space, such as across rooms or through large motions. Gross motor input forms connections throughout the parts of the brain much quicker than other types of input, especially when combined with music.
Interoception: You might need to offer supports with visual aids and related sensations, to teach by metaphor or analogy. Learning what is going on inside your body can be a longer journey for a lot of autistics. Fulfilling the other sensory needs and order of attention will help with this over time.
Personal Hygiene is Easier When It’s Not a Sensory Nightmare
These are just some trouble-shooting ideas: Run the bath with Epsom and bubble bath ahead of time so they don’t have to hear the loud water. Put larger area rugs in bathrooms to lower echoes. Put a lamp in the bathroom so they can have lower light. Don’t rush them. Give several deodorant options once they get to be 10 or 11 (around the time most kids get B.O.). A lot of autistics prefer spray on deodorants that dry instantly. Buy a few neutral scents unless they have a strong scent preference. Put the deodorants in every bathroom and carry one with you. Make deodorant part of the daily uniform. It’s not personal; everyone puts it on.
Teeth are hard. Non-foaming unflavored toothpaste like oranurse might help. Toothpastes with milder flavors like vanilla icing or blueberry or strawberry might help. “Velvet” super soft toothbrushes can help. Water flossers can help. Super soft electric toothbrushes can help. Enamel building and/or sensitive toothpastes and mouthwashes can help. Put toothbrushes by all the sinks. Give plenty of time for tooth routine. Watch youtube videos where other kids explain how they clean their teeth.
Disabilities and Neurological Differences Are Not Spiritual Ailments
I often see parents confused as to why their children’s disability symptoms don’t disappear when they increase their pious and devout practices such as prayer, sacraments, and Bible study. This is because of a misunderstanding of how God heals people with disabilities. God doesn’t turn people non-autistic, but God reveals His great love through and in and with autistic people in community with the rest of the church. So if you have an autism symptom like being really overwhelmed in a crowded church, the solution is not to pray more (though praying is always great). The solution is to accommodate the sensory needs with tools such as noise-dampening earmuffs, reserved seating, going first in line for Communion, having an away room to step out for breaks, and having loving people who will save your seat as you come and go and who look out for you to make you welcome in coffee hour, too. None of us is saved alone, and that’s true for people with disabilities as well. Rather than blaming yourself or your child if they can’t sit at a loud table in the middle of a church lunch, instead accept that the situation is not geared to autistic thriving. Look for ways to remove the barriers, such as having an adjacent room or edge of the space with sensory bins or lower lighting and an air filter for white noise and a smaller group to interact with.
God accommodates disabilities and heals us by making our lives whole in community. Healing doesn’t mean we stop being autistic; it means we thrive as autistics with fullness of joy in loving community. Similarly, if you have a food allergy that keeps you from communing the way everyone else does, God doesn’t usually *poof* away the food allergy when you pray; rather God shows up for you the way you are able to commune. For instance, I know someone who cannot partake of the Holy Body bread, but when she receives the Eucharist as Blood only, she experiences swallowing both bread and wine due to God’s miracle; in this way God accommodates her allergy and shows up for her in a way she recognizes as full despite her need to avoid eating the physical bread.
It’s really helpful to remember that there are dozens of Saints who lived their holy lives with disabilities. Even in the Bible, when God called Moses, He did not remove Moses’ speech impediment but rather assured him that He would give him a mouth to speak true. Then God gave the accommodation of asking Aaron to assist Moses as needed. Jacob only became disabled AFTER he encountered God face to face and prevailed. God displaced his hip so that he limped the rest of his life, and the disability itself became a reminder of the love of God that would not let him go. (A rabbi friend of blessed memory once told me, “We must not be afraid to wrestle with God; after all, wrestling is just a shade away from hugging.” I think of this when I read Jacob’s story.) God embraces and consoles those of us living our faith with disabilities the same way that He made the fiery furnace cool as dew for Shadrack, Meshack, and Abednego, with His presence.
Do not lose heart or waste time looking for meaning beyond the mercy and love of God with you. God is with your family with disabilities and wants you to accommodate the disabilities in community so that everyone can participate in fullness of life.
Some Options To Ask of Your Church Community
Once you have identified some of your child’s needs, tell your clergy persons. Likely the parish council/ushers, staff, and priest will be happy to help include your family. If you let them know why your child might need to move around, use focus tools like fidgets or crochet, use sensory regulating tools like earmuffs or sunglasses or weighted lap pads/vests, and use visual schedules of the church service and visual versions of the prayers (such as this Lord’s Prayer), they will make sure to convey to others that your way of participating is no less respectful and pious than the typical ways; these tools are simply part of welcome. It can also be helpful to have a quieter area like a Sunday school class to allow overwhelmed people to retreat for a sensory break from crowds, returning at the Lord’s Prayer or other relevant time to the service for Communion. If your church streams services, you can listen from a nearby room to the parts of service you have to step out from, rejoining the group as much as possible.
Most people with disabilities will also benefit from having the option of going either first or last (depending on the disability) in line for Communion, or to have the servers come to them in the pew. These are standard accommodations that most priests will be happy to extend, so don’t be afraid to ask.
Social gatherings can present a much bigger challenge, especially if your child elopes (runs away and has no sense of physical danger) and needs constant supervision and limited exit options. Often the advice given to people wanting to welcome families with disabilities is to “keep inviting,” but it’s much more helpful to find out specific needs and to change where meetings happen and types or times of meetings based on the actual needs. For instance, if a group constantly invites a family with an eloper to an open field by a highway, the family has no choice but to always decline; the group is not actually extending welcome but rather continually demonstrating exclusion if they won’t change their pattern to keep the eloper safe. Likewise, a weekly gathering in a bakery won’t ever be accessible to someone with a severe wheat allergy. Holding meetings upstairs in buildings without elevators will never welcome people who use wheelchairs. Likewise, inviting autistics to crowded, loud spaces with no sensory regulating options is not a real welcome; you’re pointing out their exclusion under the guise of checking the “invite them” box, without doing the adjustments to actually welcome them.
Social Gatherings That Could Work Well
This is just a brainstormed list for people to consider who want to welcome autistic families or for autistic families to offer as alternatives when they are asked what might work. Feel free to add and adjust; it’s the accommodations that matter, not using these specific examples. These could be adapted as suggestions given out by/to church social group organizers as well.
Doing puzzles in a library. Why it can work: one entrance/exit that is watched by careful adults; you can ask librarians as well as your co-attendees to keep an eye on the door for the eloper; puzzles are a together activity that is alongside/parallel play as well as asynchronous so that there’s not time pressure on placing pieces.
Sensory gyms. If you have one of these in your area, they specialize in autism accommodations and have an environment meant for sensory regulation. They have monitored exits and usually padded areas under active play zones.
Playgrounds inside of fences. Some churches have fenced play yards. It’s nice to meet at these for swing and play time because parents can chat at the one entrance/exit and even take turns manning the gate in pairs so that all children are kept in the safe zone. If a playground is only *mostly* enclosed, ask that teens and active (fast-running) adults come along to monitor the perimeter to keep elopers safe from streets/unsafe woods or cliffs.
Open meeting areas with sufficient supervision. Autistic children are more vulnerable to abuse and bullying, so it’s important to not go places where they can be isolated and harmed. If you want to have a family gathering, consider a parish hall, gym, bookshop meeting area, or large atrium classroom where safe, trained adults can and do keep an eye out so that children’s boundaries and safety are assured.
Your own home, with set activities and boundaries. For instance, bedrooms should be off-limits to guests. This keeps everyone in monitored public areas for safety and also gives children their rooms as away rooms for when company gets overwhelming. Set activities can be things like tea parties, board games, Mario Cart, or watching a show together. Try to provide wingback or other individual chairs for your autistic family and guests so they have plenty of predictable personal space, too. This will make being around others more tolerable.
Reinstitute “Calling” Days. Before the telephone, families used to have set dates and times when they would welcome people to their front room or front porch with prepared lemonade or little cookies or a posey, and friends, relatives, and neighbors knew that was the time to stop by for about 15 minutes, maybe as long as half an hour. These old social customs were extremely autism friendly, as they were predictable and involved routines that gave everyone something to do. For instance, in spring through autumn you could stop by on Tuesdays between 3 and 6pm, sit in the cool breeze on the front porch, share a few remarks on the weather and wildflowers and blooming trees, have a glass or cup of tea or a soda, and then send love to someone’s kin as you took your leave just fifteen minutes later. Or you could sit and rock on the porch with a friend as you both crocheted or picked peas for a little while. The routine made it low pressure; you could always return next week. And it’s easy to have a calling day with supported communication. If you want to add this practice, you could type in scripts ahead of time into a Talker (speech output device) or speech button so that your non-speaking or situational-speaking child could share a bit of news with visitors, too. (For instance, “I finished reading the new Dog Man book. My favorite part was the chase scene. It made me laugh,” would go well on a button or as a Talker device statement. You could also pre-record buttons with greetings and well wishes so your child could say with a button, “Welcome to our porch,” and “Thanks for stopping by! See you soon.”
Socialize with adult friends at the grocery store or other errands. If your household has two parents, or if you can ask a trusted friend or relative to care for your child at home so you can step out to shop for an hour, go shopping without the kids. Then invite a friend to meet you at the store and chat while you buy your groceries. I used to meet my sister at the grocery store so we could talk. We would also buy food for our disabled mom together while we were there. It wasn’t a long interaction, but it was humanizing and helped us stay in touch when we were both otherwise really busy and overwhelmed.
Meet at museums and zoos and other places with monitored entrances. Children’s museums can be great places to socialize, especially if you go regularly so that your autistic child sees them as predictable. If you get a membership (or ask for memberships to zoos and museums for Christmas gifts) you can go for just a couple of hours at a time with more frequent visits, lowering overwhelm and allowing your child to develop familiar routines. You can meet other friends and even church friends at a favorite exhibit, which can lessen the overwhelm of socializing; the interest of other children in the exhibits will also help your child’s deep interest be part of the social expectations, making it easier to feel part of the group.
Gather around an activity. This can be a set of games whose rules are accessible to everyone’s abilities, a crochet time, watching K-dramas together, eating popcorn, decorating a craft, playing with bubbles, watching a fire pit. Anything that gives everyone something to do, not just a place to be. This matters because while neurotypicals receive dopamine and social joy and calm from each other’s mere presence, autistic people feel wary and overwhelmed by more people and receive dopamine and social joy when they are doing something alongside others. Some types of team activities like nature hunts or scavenger hunts can be particularly inclusive because they allow autistic people to use their pattern recognition. There are lots of cooperative games that also rely on people contributing to an overall pattern; those sorts of activities work best for autistic children to feel included. Sensory bins, when they are big enough, can also bring people together in a group. So can large parachutes for parachute games, if you have seeded enough people around the perimeter to control the tug so no one gets ponked in the face by the parachute by kids with lower motor control tugging too hard or in the wrong direction.
Enjoy Your Home
You’ll have years to develop skills and learn how to accommodate autistic needs. Coming at this with your heart and with awareness of what makes you feel the most comfortable and safe will help a lot. Provide the maximum amount of safety, coziness, and welcoming environment you can at home so that your home is a refuge. Turn off the overhead lights. Turn on the lamps. Listen to calming music. Give cozy spaces, sheltering chairs, squishy beanbags, Christmas lights in reading nooks, hammocks or swings or rocking chairs, spinny desk chairs for twirling. Use those tools yourself. The coolest and most cozy self care or slumber party options you can think of are probably good ideas to consider adding to your home to use daily. Treat sensory accommodations as though they are necessary and as though you deserve to use them. Lately people have come to realize that saving their best for special occasions is not as good as wearing or using our nicest things regularly; use your nicest accommodations regularly, too.
I hope this helps! Accommodate the needs, and love your child!