An Introduction to Autism and the Sensory System

No One Looks Autistic

Welcome, I am Deb Kelner, mother to a 30 year old autistic son and a 28 year old ADHD son. Both of my sons are currently independent and function fairly well (with some support) in academic, work place, living and social settings. I am a teacher. I am a parent and I am also probably autistic myself. I have learned a great deal about neurological diversity by living it. I was lucky enough to be indentified almost 50 years ago as having a Sensory Motor Processing disability. The names and labels have changed over the years but I recieved several years of Occupational Therapy through Easter Seals and while I was never diagnosed as being autistic I very strongly believe that I am and it is probably what has given me the ability to recognize what my students and sons needed when they needed it. I’m not a scientist, a psychologist. I speak from experience. I don’t claim to be an expert or to have all the answers. It is your right to disagree with me. My opinions and information come from my research and my experiences.

Several friends have recently asked for an overview of Autism. How do you give a brief overview of a very complex subject? I’ve tried to make this as concise as possible but it’s still 15 pages long and it’s nowhere near complete. I’ve tried to break this article into sections to make it easier to locate the pieces of information that may be important to you.

If you take 10 things away from my writing let it be this:

1) There’s a lot of overlap and similar needs between unique individuals with neurodiversity and still, every neurodivergent individual is uniquely themselves.

2)Do not assume that an individual without verbal language is unintelligent.

3) No one “looks autistic”. Males, Females and Non-binary individuals can be autistic. Testing criteria needs to change to recognize that autism may be reflected differently in different individuals.

4) There is no cure and most parents I know, (and people I know with neurodiversity), are perfectly themselves doing their best to function in environments that are often poorly accomodating to their needs. I most certainly do not want a cure. Vaccines don’t cause autism. My family and I are all fully vaccinated and have always been like this. There is likely a genetic link but it’s not that simple.

5) Teachers, Parents and Caregivers of neurodiverse children/ adults usually know their experience the best and usually have the best interests of their family members in mind. Trust them. Listen to and believe them when they relate their experiences as they search for support.

6) Don’t offer advice unless specifically asked. It can be very lonely and socially isolating to be autistic and/ or to be the parent of an autistic or otherwise neurodiverse child. People with autism and Caregivers are looking for judgement-free friendship and understanding.

7) Don’t neglect to recognize that having a struggling neurodiverse family member affects the entire family. Make sure siblings have safe places and people where they can retreat and find support. Parents and other caregivers often have a lot of emotions to work through and also need a support team.

8) Also, contrary to popular opinion: yoga, chelation therapy, gluten free diets or other new fangled diets and or exercise programs do not cure all ills.

9) Be kind. Try to recognize that every family, and every individual will at some point in their lives have some kind of challenge or disability: learning challenges, vision, hearing or mobility struggles, a life changing disease diagnosis, mental/ emotional diseases, addictions or disorders. It’s easy to judge situations that we know nothing about. It’s much harder to have empathy and an interest in learning how to be supportive.

10) Neurological differences/ disorders involve the nervous system and the processing of sensory information. In addition to the five Exteroception senses: sight, smell, hearing, taste and touch that we all learned about in childhood there are actually three additional senses that are involved in human sensory processing: Interoception, Proprioception and the Vestibular/ balance system. Curious? Read on!

Autism is a neurological disorder represented on a spectrum of functioning (in society) or on a spectrum of needs for assistance to function in the world. Autistic individuals vary enormously. If you’ve met one person with autism, you’ve met one person with autism. Children with neurological disorders might be slower to produce speech, slower to master physical milestones (rolling over, sitting up, crawling, walking), and slower to learn toileting skills. However, you could still be autistic if you mastered these skills on a more traditional timeline. Most children learn to walk somewhere near their first birthday- this was my second child. I didn’t learn to walk until I was two. My eldest son was 14 months old when he learned to walk.

One of the main characteristics of individuals with autism is a lack of filters to help sort and comprehend sensory information. The sensory world with all the visuals, sounds, smells, textures, rapidly changing facial expressions, seasons that change, and environments where furniture is moved or redecorated is overwhelming to someone unable to sort and filter out some of the information necessary to their immediate functioning. This creates constant fight/flight anxiety. Sometimes children with autism and other neurological differences will “fight” and have a violent, loud, meltdown and sometimes children with autism will retreat into a quiet world of their own and may become unreachable as they create “tics” or other repetitive physical patterns in an attempt to self-soothe.

This might look like head banging, pulling at their own hair, sucking on thumbs, clothing or non- food items, rocking back and forth, humming or making other noises, and sometimes these children will flee/ run/ hide. In their panicked state they may run in front of traffic or into other dangerous situations. In our experience of autism at various ages and stages my child retreated, ran and had meltdowns. I had to be prepared for anything and while I got better at recognizing circumstances that could set him off or destabilize him there were often events that I just simply couldn’t predict. (You can request further information about this or Refer to my Building a Toolbox Substack post for recommendations of how to handle the unpredictable).

There was a time when I had to use a leash-like system to keep my son safe. Children with “out of whack” sensory systems can be either sensory seeking or sensory avoidant. Most people vary between seeking sensory stimuli and avoiding it. Once a parent, teacher or caregiver recognizes that a child is seeking or avoiding sensory experiences, that adult can help carefully guide the child into activities that are safe and appropriate. Sensory avoidant children need to explore their world safely but may need help and creative encouragement to do so and the sensory seeking child can easily injure themselves or others in their efforts to gather sensory information. (heat sources like stoves, ovens, hot water faucets, fireplaces and radiators need to be safety proofed). There are safe ways to provide experiences that are beneficial to both the avoidant or the sensory seeking child.

https://www.theottoolbox.com/blog/

Is an EXCELLENT and mostly FREE resource.

Making social connections tend to be difficult for individuals with neurological challenges because:

• body language and facial expressions are complex and children with autism don’t always know how to “read” these non-verbal signals. Neurologically typical individuals tend to learn body language naturally without needing explicit instruction, but children who have neurological challenges need training to understand non-verbal communication. It’s almost as if neurodiverse individuals need Brain glasses: special glasses and visual assistance for their brains.

• Additionally, children on the spectrum tend to have unique interests (sometimes labeled Special Interests) that they like to talk about incessantly and they don’t typically have Theory of Mind which enables a person to put themselves in the mind of another person and comprehend that just because you’re obsessed with fossils doesn’t mean that your classmate shares this interest. Neurodiverse people might have a single obsessive interest or they might have multiple hobbies and fascinations. In our family this means that we often become hyper focused on projects of interest to ourselves and may have difficulty disengaging.

• Because individuals with neurological differences usually have some kind of Sensory Integration / Sensory Processing Sensitivity issues they may stand too close to others (not recognizing how much space their body takes up and how much space others need) , they may use too much force when playing- also a proprioceptive issue , they might talk too loudly or too softly- vocal modulation issues, they might have self soothing repetitive habits like tapping a pencil or pen, kicking their chair, humming or making repeated sounds- proprioceptive/vestibular issues.

Autistic individuals have social anxieties due to their inability to accurately perceive non-verbal signals as well as tone of voice which can signal sarcasm, anger, sadness or other subtle messages. It was once believed that autistic people were incapable of empathy but clinicians and scientists have since learned that autistic people tend to be Highly Sensitive People (HSP) who have an excess or overwhelming amount of empathy. Sometimes HSPs are told that they’re too dramatic, too sensitive, or too much, but when your sensory system acts like a porous sponge filling you to capacity with all the sensory information around you, as well as with all the emotions of everyone else you’re in contact with, it is dramatic and too much.

In these situations neurodiverse people often react in one of three ways I mentioned earlier: a meltdown (that can look like a massive temper tantrum but has very different causality), a retreat (the child or adult seeks a cave or quiet spot to tune out and they may become unreachable as they rock, hum or do some other activity to try and quiet the overwhelm) or they escape and literally RUN away from the perceived danger of the overwhelming circumstance which can put them into the path of real physical danger. Each of these responses needs their own unique solutions.

Autistic ASD (Autism Spectrum Disorder) individuals may share many overlapping traits and characteristics with other neurologically divergent individuals. (Tourette's syndrome, ADD, ADHD, Bipolar, Anxiety disorders, Dyslexia, Depression, OCD, etc. ).

When the two hemispheres of our brains don’t communicate effectively this impacts our functionality. Autism can mimic the experience of a right brain centered stroke. The left brain is predominant and they become mired in details, unable to see the big picture. Do you see the forest as a whole or do you see and get distracted by each individual tree? Can you move between seeing the whole picture and the details? The goal of early therapeutic intervention for children with neurological disabilities is to help them build bridges between the two hemispheres. Due to the fact that neurodiverse individuals overwhelmingly see minute details they frequently have difficulty with change and transitions and need help transitioning from one activity to another or from one place to another or from one season to another. Neurodivergent people thrive on predictability , schedules and understanding what to expect. Similarly this common trait explains why many autistic individuals have difficulty making eye contact: faces can display an enormous range of emotions and movements in even short conversations.

Often medication (SSRIs, antidepressants, antianxiety meds,mood stabilizers, stimulant or nonstimulant attention and focusing drugs) used in combination with other therapeutic interventions are helpful in calming the nervous system enough to allow the individual to learn coping and self calming behaviors. In our home our 6-7 year old son was completely incapable of learning socially appropriate behaviors and behaviours that kept him and the other family members safe until we began medicinal interventions that allowed his brain to quiet enough to hear and learn about alternative beneficial behaviors. It took us a while to find the appropriate dosages and combinations of drugs that worked best for him. We worked simultaneously with skilled and trusted child psychiatrists and with Occupational therapists (OTs) , Speech and Language Pathologists (SLPs) and child psychologists.

The Sensory System

is much more complex than the basic Exteroception we all learned in school. There are actually 8 identified components of a mammalian sensory system. Exteroception includes the 5 we all know.

Exteroception:

Sight, Touch, Smell, Taste and Hearing teach us about things in the world outside of our bodies

but equally important are the Interoception system, the Vestibular/ Balance system and our Proprioception.

Interoception

Interoceptive awareness is defined as the ability to perceive the body states. This is a sensory term you probably haven’t heard of before. However you have certainly been impacted by the processing of your interoceptive sense! Our interoception controls our inner perceptions of hunger, fatigue, thirst, body temperature, digestion, and other internal systems. Feeling “hangry” or “cranky” ? “Is it hot in here or is that just me?” These are healthy messages of a functional Interoception system.

Interoception is the sense of oneself; it is the ability to understand the body’s physical signals that tell you when you are hungry or full, thirsty or quenched, in need of the restroom, hot or cold, scared or calm, etc. Interoception refers to the body’s ability to identify and process internal actions of the organs and systems inside the body. There are nerves throughout the body that send these signals to the brain to help regulate the body, and promote homeostasis. Some of these signals require a conscious act, like drinking water when we are thirsty, putting on a jacket when it’s cold, while others are non-conscious, like sweating when we are hot or nervous. Interoception comes into play when we consciously realize, “Oh, I am sweating because I feel hot, I should take off my sweater, and drink some water to cool down.” I imagine the "it's just not right" statements of an “out of sync” child and spontaneous tears due to fatigue, hunger or other interoceptive issues are all part of disfunction in this area.

HOW DOES INTEROCEPTION IMPACT FUNCTION?

Interoception can be thought of as a brain-body connection. Having a strong interoceptive sense would mean that you have a strong sense of your physical self, and what you need to promote comfort at any given time. The ability to confidently act on your body’s needs, makes everything a bit easier and makes you independent: the ability to make it to the bathroom before an accident, the recognition that you need to eat food before you get “hangry”, and stop eating before you vomit, the ability to choose clothing appropriate to the season and temperature and the ability to take off or put on more clothing to meet temperature and weather related needs.

Individuals with Sensory Processing Sensitivities often will go without food if the food offered is unpalatable to them due to a strong smell that they object to, a texture that is offensive or any number of other factors.

The ability to understand and respond to our body’s needs is a huge factor in our independence. If we don’t quite know what our bodies need, it makes everyday activities more challenging, and our ability to focus on school or work tasks might therefore become overwhelming.

Interoception has a strong connection to emotional processing because of the physical way that we experience emotions. Our muscles clench when we are angry or frustrated, we might twitch or quiver when we are scared; when calm we’re able to relax and be present. All of these bodily responses can lead to physical manifestations. If we’re unable to wear warm enough clothing outdoors on a cold day we can be subject to health consequences like frostbite. Likewise if our muscles are clenched our stomach may feel upset or one might get a headache from muscle tension. People with good interoception can relate these physical feelings to emotions.

If a person has sensory processing differences, the signals from the body may not be accurately represented or relayed by the nervous system to the brain. They may be muddled or confusing, leading to a misunderstanding of what the body is trying to tell us. Due to these sensory processing differences a person may not know why they are experiencing discomfort. As a child, my son would have a full meltdown if someone accidentally knocked into him but when he broke both bones in his forearm in a playground accident he reacted merely with curiosity. At one point he did mildly admit to having some discomfort. He never flinched or cried at injections or blood draws but when the arm cast came off he was unnerved and overwhelmed (by the buzzing of having the cast removed to reveal an arm that had been hidden for months. As a pre-verbal child he had a few ear infections but never signaled discomfort; until he spiked a fever or began to vomit I didn’t have any way to know that he was sick. Without interoception, labelling emotions is more challenging.

The vestibular/ Balance system (related to the inner ear- cochlea)

The vestibular system provides information through the inner ear that tells us about our head position and how (or if) we are moving. An individual’s understanding of movement and balance helps coordinate the movement of the head with the eyes, and enables a person to use both sides of their body at the same time or in isolation. A fully functional vestibular system keeps us from falling over when we stand up or turn our heads and makes us appropriately dizzy with too much stimuli. This kind of coordination is necessary for basic healthy body movement but also for reading, tracking words from left to right (in English) and turning pages. Our vestibular system tells us which direction we’re going and how fast, and enables us to remain upright. The vestibular system is the body’s internal GPS.

Symptoms of vestibular dysfunction: ( this is aimed at child diagnostics and may still apply to adults)

• poor eye control

• Delay in speech or language skills

• Difficulty paying attention or following instruction

• dysregulation

• clumsiness

• poor postural control (often falls from chairs)/ autistic children often have weak upper body musculature: head, neck and trunk.

• poor hand-eye or eye-foot coordination

• instability when walking on uneven ground

• unable to be held up in air/upside down/or spun

• dislike for tilting head backwards (like in the tub to wash hair)

• stabilizes themselves by walking with hands on walls

• Nervous or afraid to go down stairs

• seems oblivious to risk of heights or moving equipment

• doesn’t get dizzy even with excessive spinning or gets overly dizzy with barely any movement at all

The proprioceptive system

provides information to your brain about your body’s position in relation to your environment (which direction you are facing, for example, or how close you are to obstacles). The proprioceptive system also tells you the amount of effort being used to move your body, and regulates both emotional responses and sensory input. You might close a door with too much or too little force.

Dysfunction in the proprioceptive system can lead a child to take actions that may seem odd, such as:

• crashing into things

• walking in the direction of your gaze - inability to look in one direction while continuing to orient the body in another

• Moving too quickly

• seeming lethargic

• poor awareness of where their body is and how to move it smoothly

• walking on tiptoes

• weakened muscles

• poor endurance/posture

• Slumpiness

• clumsiness

• movements are robotic or flappy

• holds writing implements too tightly or too loosely

• looks with eyes to make body position adjustments

• difficulty judging force or distance

Therapies and Therapists

There are many, many therapeutic techniques and specialists trained to help autistic individuals.

Occupational therapists (OTs) help regulate sensory systems, can help suggest ways to desensitize an autistic individual to major triggers, can help provide exercises to develop new skills and expand on existing skills. They are generally wonderful problem solvers such as providing resources in helping a child learn to ride a bicycle, tie their shoes, and otherwise develop balance and proprioceptive awareness. OTs frequently help caregivers develop schedules and “Sensory Diets”- sensory activities plugged in at various times of the day to help solve transitional difficulties between environments or between activities.

For instance, a child with reluctance to start a school day might benefit through adherence to a set posted picture schedule that plugged in various Sensory Diet activities between the time of waking up and departing home. A Sensory Diet is composed of various activities that stimulate and calm the nervous system and engage exteroception: (smell, taste, texture, sound), interoception (choosing clothing appropriate to the weather, establishing habitual toileting, eating and drinking and physical check ins), the vestibular system through various activities that put the head in a different position (hanging upside down, spinning, rolling, somersaulting) and the proprioceptive system (helping the child feel grounded through firm touch or through “heavy work” which might include pushing or pulling something, jumping, hopping, wearing a weighted blanket or vest or “heavy” backpack). A morning wake-up through departure routine with Sensory Diet activities might look like: commando crawling from bedroom to bathroom for toileting and washing up, kangaroo hops to clothing where simple limited and weather appropriate options are offered, some gentle tug-a-war getting bed sheets pulled up and getting dressed, lumbering bear walks to go to the breakfast table, sucking a thick breakfast smoothie (strong sucking can calm the nervous system) or chewing crunchy toast and sticky peanut/ almond butter that requires a lot of chewing and swallowing and then side stepping to grab coat and backpack and carrying a weighted pack to the car or on the walk to school. Sometimes transitional objects (a special toy or blanket that stays in the car) can help alleviate transitional stress. OT interventions can also be instituted in a school/ childcare environment to help a child be less disruptive and more successful. Sensory Diet activities can be tailored to the individual’s personal interests (dinosaurs, superheroes, trucks and construction equipment, Disney Princesses), the time of year and the person's abilities. Sensory Diets are often switched up and changed throughout the day or week to accommodate new or changed needs.

Physical therapists (PTs) can help stabilize bodies and encourage greater trunk strength and head positioning through various exercises. Gymnastics, tumbling classes, sports participation (in caring, non-competive and understanding environments) can often be beneficial. Speech and Language pathologists (SLPs) can teach speech sounds but can also address social speech: vocal modulation, turn taking and how to engage others in conversation. Social skills groups are often offered by psychologists. Children, teens and adults with neurodiversity often have executive functioning challenges and need help with organization, task prioritization, getting started with tasks, scheduling. Talk therapy can help create solutions for challenging behaviors while suggesting new behaviors.

Social Stories, a concept coined and developed by Carol Gray carolgraysocialstories.com and used by many therapists and caregivers use sometimes simple and sometimes more complex scripts to explain the hows and whys for staying safe, for doing tasks, for vacation appropriate behavior and even for the changes in the seasons. It might be for something as simple as tooth brushing or for something as complex as how to ask someone over for a play date.

It starts with a simple script. For example, to teach teeth brushing to a child with sensory sensitivities you explain the basics: we brush our teeth to prevent disease and bad breath. When our mouths are unclean, many people don’t want to listen to us because our breath smells bad. If we don’t brush our teeth in the morning and in the evening the germs in our mouths can make us sick. You can choose a toothbrush that you feel most comfortable with. Here are some examples, you can touch these and rub it on your hand to see how it feels. Some toothbrushes are electric and can buzz and tickle but we don’t have to provide the energy to make them go. Some toothbrushes are quiet but we have to give them energy to make them work. We put toothpaste on the brush to help clean our teeth. It’s like soap for our teeth but tastes better than soap. There are different flavors of toothpaste, some taste like fruit or cinnamon or mint. You can choose your favorite flavor.

Step one: wet the toothbrush… etc.

There are as many ideas about how to help a person with neurological differences as there are people with autism. Some people believe that special diets eliminating gluten or casein or other possible foods help with behavioral issues. Some people believe in dietary and vitamin supplements. Some people use a behavioral modification therapy called ABA - Applied Behavioral Analysis- which is quite controversial and punitive. There are multiple Autism Groups in existence. Some, such as Autism Speaks purports the belief that autism needs to be “cured”. There are many parents who, in their struggle to understand the question “why?” “Why my child?” have latched onto the disproven and absolutely unscientific belief that autism is caused by immunizations. This is absolutely not true. While immune injury does happen in rare cases it is not responsible for autism.

Often families of autistic individuals experience social isolation and rejection. Many disabilities are signaled by the equipment used by that disabled individual: hearing aids, canes, glasses, guide dogs etc. People with downs syndrome often have unique head and facial features. Crutches and wheelchairs signal mobility challenges. Autism is complex, affects people differently and doesn’t typically have any specific “look”. Children with many neurological challenges look just like people who are neurologically typical. Autistic people might appear socially awkward, they might speak in a stilted manner, they may walk or move in a way that looks atypical. Autistic individuals don’t always react in a typical fashion and this can also be true for people with other neurological differences. Unfortunately our society tends to make broad assumptions about people which can be inaccurate. People with major depression can appear “happy”, people with various disabilities can appear to function typically. We must always remember not to judge.

Autism parents need to be validated and heard. They don’t necessarily need advice. They want and need acknowledgement of what they are experiencing. What they experience at home may be quite different than what other people observe publicly. An autistic meltdown - due to sensory overload- can be very dramatic and frightening and as it can look initially like a temper tantrum people witnessing a public meltdown can be very judgemental and insensitive. Some children are completely incapable of surviving time outside of their very controlled environment which further isolates families. My autistic son had (and still has) “good days” and “bad days”. When he was a child other parents often scolded me for not having higher expectations for him. Despite my attempts to explain, they didn’t really understand. He looked “normal”. Normal is not a word well suited to human beings. It can be an appropriate term for machines but I have never met a person who is “normal”. As a parent of neurodiverse children and as a person with multiple diverse abilities and disabilities I often wondered why I couldn’t just be “normal”. I’ve spent my life learning that no one I know and no one I’ve ever met would describe themselves as “normal”. Every human being struggles at some time during their lives. Perhaps those of us who are made aware of our family members' struggles early in their lives are the lucky ones because we learn not to take anything for granted. We learn to pay attention and to be a bit kinder and less judgemental. There will be good days, good weeks and good months and there will be times when you wonder at 6 a.m. how you'll survive the next hour. Have faith. Believe in yourself. Believe in your child. Believe in a power greater than yourself. Keep going. It won’t always feel like this.