When we think of physical impairments and disabilities, we assume that the home environment needs to be altered to remove handicaps for daily living. The same is true for neurodivergences like autism.
I’ve written before about sensory diets, and I will post a fuller guide to an Autism Accessible Home soon. But for the purposes of getting a handle on your brain’s needs, here are the most important areas to address to give yourself (and/or your family members) the best opportunities for self-regulation:
I will go into more detail and provide a customizable checklist in my free Autism Accessible Home guide, coming soon to this site. In the meantime, share in comments how you arrange your home to help regulate your sensory needs.
Make sure to follow this blog to see the entire series on the Autistic Brain Owner’s Manual. Follow my Facebook page for live videos demonstrating how I put these tips into practice in our autistic family life.
For those of us who ask the help of saints in our daily lives, one of the first questions that comes along with an autism diagnosis/recognition is, “Who is the patron saint of autism?”
As far as I know, there are no official patron saints of autism. Yet, I can attest to the help and intervention of several saints in our autistic lives. Here are some of the saints that have made themselves known to us as helpers for autistic Christians.
Do you have patron saints to add to the list? Share your stories in the comments!
It’s okay to laugh.
A sensory diet isn’t a weight loss program. It’s a way to describe the activities and stimuli you provide for yourself or your special needs child to help regulate and integrate your physical (and therefore emotional and cognitive) experience in the world. The professionals at THIS LINK describe it much more fully and clearly. (Bookmark that link! It’s awesome.)
In your home, a sensory diet might include heavy work options like pushing a lawn mower, pulling wet laundry from a machine, or lifting a trash bag, as well as soothing movements like rocking in a rocking chair, swinging, or bike riding. But what about your church?
Ever notice that children tend to melt down more often in church than at home? Unmet sensory needs are likely to blame. The sensory environment is likely extremely different.
We can help with sensory soothing at church by going through a sensory checklist for our churches. Here’s the Sensory Diet Checklist (linked above as well, because it’s one of the most useful links I’ve found). I encourage you to go through it and brainstorm opportunities in your church environment, rituals, and routines that meet the different areas of sensory needs.
Write down your list and share it with families and persons with special needs, the pastor or priest, Sunday school teachers, and other advocates.
Here are the additions I made to the sensory checklist relevant to my church. I share them in hopes that they’ll help you notice sensory diet opportunities in your faith community.
SAMPLE CHURCH SENSORY DIET
Heavy Muscle Work (Proprioceptive):
Oral Motor (Working the Mouth):
Download This Sample Church Sensory Diet Checklist Here:
“Well, of course growth spurts are good things,” you might say, if you don’t know what they look or feel like.
That means that if you have an autistic preteen making strides in therapy, he can suddenly have what looks like a psychotic episode to the uninitiated, or to the hyper-observant and autistically in the know, a growth spurt that looks exactly like the disregulation that happens in a typically developing two year old.
Remember the terrible twos and threes? They have a reputation because the brain connections formed by neurotypicals in those years — brain connections dealing with attention and communication — produce side effects when they first happen. Think of it like a power surge that temporarily overloads the newly enhanced power grid. I’m not sure why it happens, but it seems our brains like to test new ciruitry (long chain and cross-hemisphere synapses) by ramping up the power to full blast as soon as they’re made.
Here are some things you might encounter in a growth spurt, no matter your age (and I mean this even for the high functioning autistic adults out there).
If you encounter any of these symptoms of a growth spurt — especially if they’re happening around the same time — be gentle with yourself. Make yourself at home by soothing your senses, follow lists to help you make decisions, and do your best to get sleep and rest. Once you have leveled up on the skill that was developing, prepare for the next growth spurt by using the strategies outlined above and in the other sections of Your Autistic Brain Owner’s Manual.
Follow this blog to receive immediate updates on the rest of this series.
Our brains starting at the brainstem work from the inside out. There are some types of experience that we process before we even think about them. These include first emotions and then visual input. Language and other higher thought comes later.
What this means is that your nervous system (and everyone’s nervous system) feels first, sees second, and thinks third.
For autistic people, language processing can sometimes be a challenge. It’s important to know how the brain works so that you can build on what’s already working.
In every human being, no matter their cognitive level, emotions are functional. Emotions are precognitive. That means they are processed in the spinal cord, the brain stem, and the deep brain before they reach the parts of the brain used for thought.
Why does this matter? Because the early nerve gets the attention. Your feelings (including emotions and sense of safety from sensory soothing) will always win a battle for attention, even if they’re not acknowledged. They must be integrated with your thoughts through careful work training your attention to understand thinking, observations, and feelings at the same time. (I highly recommend the Social Thinking curricula for getting a boost in this area [not affiliated], but there are several programs or therapies that can help you integrate experiences.)
If you want to teach a child with autism, build from the inside of the brain outward. Use AAC or other tools to teach language for emotions first. Often progress is slow or non-existent because people trying to help start by trying to teach to the higher processing parts of the brain first. That’s backwards.
My formerly non-verbal, formerly profoundly cognitively delayed (less than 1st percentile), profoundly autistic son is now cognitively average for his age group with language growing with the help of AAC. He’s still autistic (of course!) and still working to develop communication skills, but he’s verbal now, too. The success in helping him function and grow into self-regulation skills comes after two years of intense therapies, including starting our pragmatic language with emotion filters from the beginning.
If you’re an adult reading this, the same principle applies. Sort your emotions and feelings first, because they’ll have your attention whether you intend them to or not. In order to help your brain work best and to clarify your thinking, start by checking in with your body. The pre-cognitive feelings you find there will give you important information about your physical state, and acknowledging your feelings will allow you to move on to more complex thinking, including speaking.
After feelings, we think in pictures or concrete experiences. Like survivors of trauma, autistic people sometimes have challenges integrating the thoughts they see with what they understand or wish to do. I’m going to tell you how to use this fast form of thinking as a strength that you can build on.
I met a young man with severe speech challenges at a conference who was not given access to Augmentative and Alternative Communication until he was a teenager. At the time I met him, he was a successful college student, communicating with a speech output device. What his story showed me is that we can build on brain strengths to help communicate and integrate higher thinking no matter our age.
You might experience your own thought processes as instantaneous. Though feelings and sight catch attention first, the speeds of the nervous impulses are so fast that we don’t usually notice them in order. The important thing to remember is that slow or foggy thinking or communication or fast-racing thoughts can both be due to feelings taking up our attention – even when we aren’t thinking about paying attention!
Movement, making music, using our bodies to produce language (through pen and paper, keyboards or AAC systems/devices), checking in with our bodies, and making art can all help to strengthen our focus on thinking. This shift in focus that enables us to pay attention to our ideas and to tell stories about our experiences is what neurotypicals mean when they say they need to “clear their head.”
Most of us have larger than average heads with more than average quantities of synapses. When we take care of ourselves by building on the natural order of attention, we can turn that plasticity into a strength.
People like to say that our autistic brains don’t come with an owner’s manual. I’m going to share what I have learned about my weird and wonderful brain, and we’ll have a good working outline for our autistic brains when we’re done.
*These lessons will also help people with SPD, ADD/ADHD, many sorts of learning disabilities, and other neurodivergences that center in the prefrontal cortex.*
Attention is the golden ticket to language, self-regulation, and functioning. Joint attention can be hard to develop at first until we learn the skills to engage it and the bravery to follow it to broaden our worlds. But there’s great news for our unusual brains.
To train our attention, it helps to weed out the things we don’t need to think about. That brings me to the second part of the Autistic Brain Owner’s Manual: Reduce Cognitive Load.
Please share your favorite ways to reduce cognitive load in the comments!
Follow my Facebook page for live videos demonstrating how I put the Autistic Brain Owner’s Manual tips into use in my life. Make sure to follow this blog so you don’t miss a post!
Our family prayer corner is filled with gilded handwritten icons that catch the eye, but today I want to talk about a small icon that hangs in the living room near our dining/library table. Its blue background settles in with the deep teal-blue of our walls, and you might miss it if you don’t know it’s there. It’s a holy icon of The Wedding at Cana.
Most Christians are familiar with the story depicted. Jesus and his mother are at a wedding when the wine runs out. His mother tells the servants to do whatever they ask. He tells them to fill up 6 big stone water jars and draw some out for the steward of the feast. When they do, it’s not just wine, but the best wine ever. The steward gives the groom a talking-to about how you’re supposed to serve the good wine first before everyone gets drunk. This miracle is the first one in Jesus’ public ministry.
This is not a post about drinking wine. I’m fed up with the wine advertisements masquerading as life advice that come at mothers in a steady stream. Alcoholism is promoted as a social skill these days, if the ubiquitous sad jokes about mothers needing to drink lots of wine each day are to be taken at face value. But getting drunk is not the stuff of human love or flourishing or a basis for sturdy marriages.
This post is about being completely tapped out.
When you have a family with special needs, all the reserves you thought would be plenty are exhausted just when the party gets going. Your time, money, social energy, space, and focus are emptied out. You empty them out on purpose, and you empty yourself out on purpose, for your kids and your family. But that leaves you reaching for the shared cup of celebration without anything to fill it.
Marriages work when we choose each other and attend to each other daily, and they also work when we have presence, focus, energy, time, and space to show that love. When those things run out, what then?
Then we need Jesus to come and give us the good wine.
This is not a post giving you a to-do list that’s impossible to meet. You don’t need weekly date nights you can’t afford (and who can you trust to keep your kids from running away?) or weekends away that would spiral your kids into a month of dysfunction, or a cleaning service, or more money to magically appear. Those things are all nice, but some of them are out of reach or out of your control. What’s in your control is the realization that you are out of wine and the request for help from Jesus.
When I am empty of my carefully prepared emotional regulation, my reserves of quiet and patience, my desire to have someone near my face, my ability to make and communicate a decision, my desire to speak, my ability to talk without being pedantic –my skills, in short–, it is THEN that God can bring the good wine. That’s when the unconditional love for one another, the humble presence with each other, can truly shine.
We might already be drunk on the joys and weariness of child-rearing and managing ourselves, but the good wine comes to give us a sober and clear mind and unblurred vision. It comes to make our hearts – the noetic centers – merry. Marriage is not best known in the conditions that we often think we’re meeting when we enter it. It’s best known when we go together to God with empty cups and open hands and ask God to give us joy with one another in the gift of unconditional love.
We’re often taught in shows and magazines to see marriage as transactional, and our broader culture makes the case for that view of marriage. It’s easy to watch expensive weddings and divorces and to think that it’s often based on meeting or failing to meet expectations.
But the Church teaches a different way, where humans are bound not by the desire for use of the other, but by desire for the fruitful and God-bearing humility that comes in sharing life with each other. Marriage is bearing witness. Marriage in the Church makes the bold and counter-cultural claim that two persons can love unconditionally, that mercy will triumph over judgment in this household, that a man and a woman will lay aside their desire to have power in order to empty themselves so that they may know God together.
So what does all of this mean in the trenches? Why is the Wedding at Cana encouraging when I haven’t slept more than 4 hours for weeks, or when no one likes the food we put on the table, or when the grownups are so tired of hearing whining that they’re biting their tongues not to holler? How can it bridge the gap between a husband and wife when neither of them got to their chores that day, and the little one finally ended his meltdown at 1am?
If you will look at him or her and say, “The wine has run out,” it’s as though you’re saying, “I am not blaming you for your weakness, and I hope you will forgive mine, too.” They will look at you and hold your hand in front of the icons, and you will turn your weary faces and embarrassed eyes toward the Lord. Together, you will tell Him that you’ve run out of wine. You didn’t get your child’s attention that day, or you were injured by playing with them. You don’t know if this one will learn to spell, and you hope that one will eat something besides pretzels. You wish you could lay your head on your husband’s chest and rest in quiet, but the kids will be up in 5 hours. He wishes he could take the burden from you, but his burdens are also overwhelming him. You empty yourselves there in the silence or the soft-spoken prayer or the music until you have offered every empty jar to the Lord.
Then comes the good wine.