Category Archives: Neurodiversity

Interoception

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While you may be familiar with the five senses (hearing, sight, taste, smell, touch), there are more than that, including: vestibular (am I balanced), proprioceptive (where is my body in relation to the things around me, and interoception.

Interoception is your perception of your own internal states: are you hot or cold? are you hungry or thirsty? do you need to pee? poop? move your body to a more comfortable position? are you sick? is your heart racing?

Developing Interoception

When a baby is born, they display the most basic of “feelings”. They are content, or they are distressed. That distress is often caused by an internal experience, such as hunger, fatigue, or pain. But they do not yet have the life experience to interpret what those sensations mean, and what would fix them.

That’s where parents and caregivers come in. We do our best job of guessing what they might need and meeting that need. If we guess right more often than not, they soon learn that when they feel this particular set of internal cues and then they eat, they feel better. Eventually they learn to label it as hunger, and someday they learn that they can eat before the hunger pangs hit to ward off that feeling.

Learning to tune into and trust our internal cues helps us to take care of our bodies. For example, stopping eating when you’re full honors those cues, and can be helpful for developing healthy eating habits. Being told “you have to finish all the food on your plate” teaches you to ignore those cues and keep on eating.

Interoception and Emotions/Behavior

As we get older, noticing and interpreting internal cues is so helpful for taking good care of our bodies, but having interoceptive intelligence also helps us with emotional and behavioral regulation.

We’ve all experienced being “hangry.” When you’re hungry, the smallest irritation sets off a disproportionate wave of anger. We know that when a child is tired, they get cranky or sad. Letting a child move and change positions during group time can help them be comfortable and help them pay attention. When a child just can’t sit still in a class, it is often worth asking whether they need to pee.

If your child is having lots of tantrums, it’s easy to interpret those as behavioral choices. But it’s worth asking yourself – is it possible that instead they are sensory meltdowns? When a sensory meltdown happens, the best way to calm it is with co-regulation. You as the caregiver stay as calm as you can, speaking quietly, holding them gently until they get back to calm. The bridge from them needing your help to calm themselves to being able to calm themselves down to them being able to notice internal distress and dispel a meltdown before it happens is interoception.

How can we help build a child’s interoception?

For babies: notice their cues, do the best you can to interpret them and respond to them promptly. This helps your baby learn how their body signals tell them what they need and how those needs can be met.

If we ignore bodily issues, we teach them to ignore them. If we change a wet or dirty diaper promptly it helps them realize that when they pee or poop something happens – that will help with potty training later. But if you often delay diaper changes, they learn to just ignore the situation, and are hard to talk into potty training later.

For toddlers and children, start to interpret their experience. “I notice you’re wiggling a lot, I wonder if you need to pee.” “You’re all sweaty now – I bet you’re hot. Do you think taking your coat off would help?” As with teaching emotional literacy, rather than telling them how they feel, phrase it with curiosity and questions that encourage them to tune in to those inner signals for themselves. “Hmmm… it’s been a long time since we ate, I wonder if you are feeling hungry yet?”

You can also share your own experience: “whoo – I’m really cranky right now… you know what I think is going on? I think I’m hungry and I notice that I get really cranky when I’m hungry.”

Don’t dismiss their experiences. If they hurt themselves, instead of saying “you’re fine”, say “it seems like that really hurts, huh? I’m pretty sure it will feel better soon, but what would help you now?”

When they’re younger, we might teach common experiences, like “if your stomach growls, it means you’re hungry.” As they get older, we can talk about how everyone has unique body experiences: “if you’re feeling worried, where do you feel it in your body? When you feel that way, what could you do to feel better.”

Understanding their own internal needs helps them to meet those needs, and helps reduce the chance that those needs will distract them from learning and from behaving well.

Learn More about Interoception and Sensory Regulation

(Side note: Enteroception with an e is a subset of interoception, and refers specifically to the senses of your gastrointestinal system – hunger, fullness, and urge to have a bowel movement.)

Stimming: Self-Soothing Behaviors

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What is Stimming?

Have you seen a child flapping their hands? Elbows bent, hands up by their face, hands flapping like bird wings?

Some children may do it when they’re worried or anxious. Other children may show this behavior when they’re excited or happy, as in this video.

(You can see other examples of excited hand flapping / stimming at https://www.youtube.com/watch?v=QD9OPDUVejo and https://www.youtube.com/watch?v=R_gZqQy_Ae4.)

Hand-flapping is an example of a self-soothing behavior. There are several other self-soothing behaviors children use, like rocking, thumb sucking, jumping, spinning, humming, hair twirling, or lining objects up in a row. These repetitive behaviors might be called “stimming” for self-stimulating, or stereotypy.

This is common in toddlers, then tends to become less common as they get older – fading in the preschool years. But some children continue to do it. Parents of older children who still do this often view it as a problem that needs to be solved, and may say things like “how do I stop my child from flapping their hands?”

Let’s first figure out why children stim, and then think about how to respond to it.

Why do people stim?

When you’re nervous, do you ever bounce your knee? Or bite your lip? Or wring your hands? When you’re impatient, do you tap your foot or drum your fingernails? Have you ever been so excited that you want to bounce up and down? Or clap your hands and squeal? Or throw your hands up in a victory celebration? When there is a sudden loud noise, do you cover your ears? When you’re waiting on hold on the phone, do you click your pen up and down, pace, or rock your chair? Do you mumble to yourself or swear repeatedly to communicate your frustrations? These are things we all do. These things could be called “stimming” because our brains/bodies are seeking to regulate stimulation, whether that’s to distract us when we’re bored or soothe us when we’re anxious or release tension or express big emotions. Having stimulation that we chose can help us to regulate our brains/senses.

Neurotypical folks can typically stop themselves from doing these behaviors if they feel like it’s not appropriate where they are, or if they’re disturbing someone or if they don’t want other people to notice them.

Some people have a hard time stopping themselves from stimming or are very uncomfortable if forced to stop. This can be a sign of autism, though not everyone who stims is autistic. (If your child is over 3 years old, and frequently flaps their hands or uses other stims and also shows other possible signs of autism, it’s a good idea to learn more about autism, learn more about deciding whether to have your child assessed for autism, and how to access developmental testing.)

If you want to better understand why someone is flapping or stimming, here are ideas to explore:

  • Determine what triggers the behavior. Is it too much stimulation? stress? excitement overload? Or boredom? (too little stimulation)
  • If you change the environment (for example, making it quieter and more peaceful), does that change the frequency of the stimming?
  • If you give them an acceptable alternative for boring circumstances where they have to sit still (like having a fidget spinner in class or a coloring book at church), does that reduce the stimming?
  • Does it help if you “notice” and validate the underlying feelings: “It looks like you’re really excited about this.” Or if you notice what’s triggering their behavior: “it is really loud here – that’s bothering you isn’t it?”
  • If it only happens in certain situations or certain moods, it can be easier to understand and to influence. If they do it all the time in all circumstances, it may have become a habit, and making changes to the environment or activities may not change it.
  • Are they seeking attention? An autistic child who is stimming typically does not care whether others notice. Some neurotypical children may do behaviors like stimming because they notice that they get a lot of attention when they do. If you have realized they only do these things when they have an audience, stop paying attention to the performance and see if the behavior fades.
  • Can you re-direct their attention to some other activity? If so, then do. Or is it really hard for them to stop? This perseveration may be more common for autistic children.

Do we need to stop a child from stimming?

Before deciding that stimming needs to be “fixed”, it’s important to ask autistic people about autistic experiences to get their perspective. In her post “the Obsessive Joy of Autism“, Julia Bascom, current Executive Director of the Autistic Self Advocacy Network (ASAN) says

“One of the things about autism is that a lot of things… are harder. But some things? Some things are so much easier. Sometimes being autistic means that you get to be incredibly happy. And then you get to flap… I  flap a lot when I think about Glee or when I finish a sudoku puzzle… I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious.”

Julia Bascom

And another perspective from an individual with an autism spectrum disorder:

No one should try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? … Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

Good Autism School

I know many autistic adults who may “mask” at work and in public – acting in ways that are considered neurotypical. This helps them to fit in better but can be exhausting. When they are amongst friends and family, they may stim when it soothes them or gives them joy.

My son is 11 – his current stims are making random sudden noises, and the need to say the same thing multiple times in a row. (Typically either something he’s really excited about or something he’s saying to talk himself out of being worried about something.) Our family knows that saying things multiple times is soothing to him, so we roll with it at home. But we do let him know that it can annoy other people or lead peers to shun him, and we asked him if he wanted our help figuring out other ways to manage this – like writing things down on post-its he brings home from school. Random noises are OK at home, but we asked him if he wanted ideas for alternate things he can do elsewhere when he has that energy that won’t disturb others, like blowing out a puff of air instead of making a noise, or flicking his fingers.

If the stimming isn’t causing problems for the child, you don’t need to “fix” it.

When is stimming a problem to work on?

  • When it interrupts other activities (e.g. their hands are so busy flapping, they can’t use them to do other things),
  • When it is blocking learning (e.g. they are frequently being asked to leave the classroom because they’re overly disruptive),
  • When it affects your child’s ability to make friends,
  • If your child is accidentally harming themselves or others, or
  • If the child themself wants to reduce the behavior or wants to learn to mask when they choose to

What are ways we might reduce stimming?

First, never punish stimming. This would be like punishing a child for crying. Or for laughing. Don’t criticize or shame a child for stimming.

Here are some supportive methods to try that might reduce stimming if it has become a problem:

  • Increase physical activity: If the child gets more exercise (especially heavy work) or spends more time outside, does that reduce stimming behavior?
  • Change environments: Can you spend more time in environments that the child finds calming and less time in places / circumstances that overload them?
  • Place and Time: Can you set times and places where stimming is welcomed? That might help reduce their need to do it in situations where it is more problematic.
  • Replacement behaviors: Are there other things they can do with their body that meet the same needs? Maybe hand clapping, hand pressing (like in a prayer position), playing with play-dough, or using a fidget toy. If they are stimming, instead of saying “don’t flap”, re-direct them to the replacement behavior: “get your calming bottle.” When you see them proactively choosing a replacement behavior instead of stimming, praise that.
  • Overcorrection: Sometimes flapping hands really hard and fast for a just a short while, or jumping hard and fast for a little while, will help get it out of their system quicker.
  • Release Tension: One of the reasons for stimming is to release tension – are there other effective releases – laughter, crying over sad movies, journaling or drawing?
  • Build emotional literacy: Teach and practice emotional regulation skills (Check out the Zones of Regulation tools.)
  • Raise awareness and make plans: When the child is stimming, you could briefly comment on it to help them be aware. If you notice common triggers, you may help your child notice those. Then you can work together on an action plan. For example, if noise and crowds overwhelm them, you might plan a trip to the zoo for a Tuesday afternoon rather than Saturday morning. Prepare and inform: when you’re approaching an event that might cause your child stress, let them know and talk about ways they might manage that.
  • Professional support: A therapist to address anxiety can help. An occupational therapist trained in sensory integration can help with regulation. (You may also see information about ABA therapy. That can help, but be very cautious about this option, as much of ABA therapy is framed around the idea of “fixing” autism by training children to behave “normally” and withholding rewards when they show autistic behaviors. I recommend you not choose places that define stimming as a problem, instead choose one that offers alternatives to stimming that a child could choose to use instead.)
  • Parent support: Talking to other parents of kids with challenging behaviors can be a huge help, as you learn you’re not alone in your worries. It can also help parents to talk with a parent educator, parent coach, or therapist to discuss their own concerns.

Learn more:

Accessing Developmental Testing

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child working with blocks

Note: This post is tailored to families in Washington State, but the general process is similar elsewhere.

Monitoring

I encourage all parents and teachers to do developmental monitoring: from time to time check out a developmental checklist to be sure your child is on track. And read developmental newsletters for ideas on how to support well-rounded development. Or, you can check out the Washington Early Learning and Development Guidelines which are an amazing resource for children birth through grade 3, where each developmental level includes ways to support your child’s development, differences in development and guidelines for when/how to seek intervention services.

Screening

About 1 in 6 children has a developmental or behavioral issue, such as autism, ADHD, dyslexia, and developmental delays. Only 30% of those concerns would be detected just through the monitoring process. Early intervention from birth to age 3 can help children learn important skills, and getting support and services for children age 3 and up can have a huge benefit for their schooling.

If you are wondering if your child might have autism or ADHD or developmental delays, start with a screening tool. The results might help to reassure you that your child is actually developing normally or they could validate that seeking further assessment and testing would be beneficial. The ASQ – Ages and Stages questionnaire is one of the best available tools for overall development, and you can complete it yourself in about 15 minutes. The ASQ-SE screens for social-emotional development, and can help to identify possible autism signs. (Learn more about using the ASQ and ASQ-SE and understanding your child’s ASQ results.)

For Washington state residents: you can complete the ASQ and ASQ-SE online and a child development specialist from Within Reach will contact you with the results within a week and discuss those results with you. Oregon offers an online ASQ and ASQ-SE here that appear to be open to anyone – you will see the results when you complete the screening.

Talk with a Professional

A helpful second step is to talk to your child’s doctor or their teacher or childcare provider about your concerns, and share the results of the screening. Here is a tip sheet for talking with a doctor about your concerns.

Your child’s doctor may offer a referral to a specialist, such as a child neurologist or a child psychologist. You could also ask for a written referral for testing, using this form.

You can also directly contact your state’s early childhood system to request a free Child Find Evaluation to find out if your child qualifies for intervention services. You do not need a doctor’s referral to make this call.

Evaluation – for Children under 3

The Individuals with Disabilities Education Act, or IDEA (specifically in Part C) guarantees your child a right to a free developmental evaluation. Some people call it “birth to three services,” “early intervention,” or “Part C services”. If your child qualifies for intervention, services can be billed to insurance, or offered on a sliding scale. You will not be denied services if you can’t pay for them.

In Washington, evaluations are provided through ESIT – Early Support for Infants and Toddlers. (Info for Outside Washington.) Each county has a lead agency that processes referrals and schedules evaluations. All the agencies are listed here. To learn which agency serves your location, you can call the Help Me Grow Washington Hotline at 1-800-322-2588.This statewide, toll-free number offers help in English, Spanish and other languages.

The evaluation process uses standardized tools and observations to evaluate a child’s development in 5 areas: physical, cognitive, social-emotional, communication, adaptive / self-care, and sensory processing skills. The evaluator uses natural situations to look at these skills as a child plays, stacks blocks, draws, etc.

If the evaluation shows your child is eligible for services (eligibility criteria here), they may develop an IFSP – Individualized Family Service Plan – and you will be referred for early intervention services, such as physical therapy, occupational therapy, speech therapy, hearing or vision services. In most cases, services are provided in the home or in a child-care setting.

Learn more about IFSP and Early Intervention, and even more about IFSP.

Evaluations for Children age 3 – 5

In Washington, “Child Find” evaluations are offered through your school district. They are free but you must request them.

You can call your school district coordinator* and say: “I have concerns about my child’s development and I would like to have my child evaluated through the school system for preschool special education services. Can you help me or let me speak with someone who can?” Write down who you speak to, the date, and what was said; you might need this information later.

At some point, you will need to submit a written request for evaluation. Some parents start with that. A sample letter to request evaluation is available on PAVE’s website, or the state offers a referral form. (Learn more about how to make the request for an evaluation.)

From the time of request the school has 25 school days to decide whether to evaluate, then 35 school days to complete the evaluation. Make sure you keep a record of when you started the process. (Learn more about the referral and evaluation process.)

The evaluation might look like academic tests, questionnaires, informal observations of the child and parent interviews. They may measure: communication skills, hearing and vision, motor skills, social skills, academic skills, thinking and reasoning. (Learn more about evaluation.)

IDEA describes 14 disability categories. If your child meets the criteria under one of those categories, they are eligible for an Individualized Education Program (IEP). Learn more about developing an initial IEP. (Tips for preparing for your IEP meeting.)

If they don’t meet IDEA eligibility, but they have a disability that impacts a “major life activity” they can have a section 504 plan for accommodations which enable equitable access. (If they are found not eligible, learn what to do.)

Children with identified disabilities can receive free special education and related services at preschools run by the local public-school district or through Head Start or ECEAP. (Learn more about preschool placement.) Related services might include speech therapy, occupational therapy, mental health counseling or special transportation, etc.

If your child is older than 5:

Contact the public school that your child attends or that they would assigned to (if they are homeschooled or attending private school). From there, the process is much as described above.

Most specialized education is provided by special educators who “push in” with support in the general education classroom. (The IDEA requires education in the Least Restrictive Environment (LRE) to the greatest extent possible with typically developing peers.) Some children do not thrive in typical classrooms, and may receive “pull out” instruction in a specialized setting.

Families that homeschool or attend private school, have the option to receive some services from the public school system, even if they are not attending full-time. Learn more about private school Equitable Services plan.

Private Evaluations

In order to access publicly funded early intervention services and special education, you will only need to complete the free evaluations described above.

It is also possible to have a formal evaluation by a child psychologist or psychiatrist, a occupational therapist or speech/language pathologist, clinic specializing in autism, ADHD, etc. This may lead to a more detailed report about your child’s diagnosis and how you can support them, or it may make you eligible for additional services that could be covered by insurance, or may make your child eligible for medications. These diagnostic evaluations may be covered by your insurance or might require paying out of pocket, and can be expensive, so be sure you check about costs and coverage.

If you’re looking for a provider for a diagnosis, seek recommendations of knowledgeable professionals in your area from:

  • Support groups (for example, Autism Speaks has a national directory of providers;
  • People who have children or other family members with the condition
  • Governmental resources (for example, the Autism Guidebook for WA)
  • Your primary care provider or other health care professionals
  • Early intervention or special education providers

More Resources

*How to Contact Your School District

For children age 3 to 5, you’ll reach out to the special ed team in your child’s school district. Here’s info for all the districts in the state. k12.wa.us/sites/default/files/public/specialed/resourcelibrary/SpEdDirectory.pdf

Here are contacts for district’s on Seattle’s Eastside. (I teach for the Bellevue College Parent Education Program so these are the resources I refer to.) If their websites said what agency provides evaluations for ages birth to 3, I list that after the website URL. (If the Early Intervention provider is not listed, call Help Me Grow Washington Hotline at 1-800-322-2588.)

To refer your child for Kindering services, call (425) 653-4300 or submit an online referral form here.  Kindering provides helpful information about their telehealth evaluations.