Birthday parties. Let's talk about it.

Parties, gatherings, events, picnics, etc., where there will be lots of people, noise/music, activity, chatter/laughing, and hidden, unspoken rules for "appropriate" behavior.

The event may even be outdoors, which brings a whole host of safety concerns.

Or, the event could be near a body of water (pool party), which definitely adds even more safety concerns.

For parents with Autistic children, or another disability, do you just not go??? Is that the way to do this? How do you get a child through elementary school without ever attending a birthday party?? These days, kids have to invite the whole class. So in an average school year, your child may receive several birthday invitations, to loud, active, parties full of running, screaming kids, hopped up on sugar and soda.

Before we jump into what to do, let's back up a bit and describe the challenges: Why are birthday parties sometimes so not fun, and so very hard? 

Birthday parties/large gatherings are (often) loud, full of junk food/ice cream/candy/cake, full of people, tantalizing presents, music or entertainment, and the expectation to socialize ("You kids go play"). All of this can combine for quite the sensory nightmare.

Your Autistic child may find the event overstimulating, scary, uncomfortable, or painful (overstimulation that one cannot leave can be painful). Your child also may be unable to tell you any of that, which leaves demonstrating the discomfort through their behavior.

I have seen this up close many times, both "on the clock" and off the clock. I've been at kids birthday parties and seen that girl or boy seriously struggling and having an awful time, or attended birthday events with clients to provide support during the party. 

I think its critical to reset expectations and have a clear understanding of just how scary parties can be for Autistic children or adolescents (I'm not mentioning adults because, typically, adults with disabilities are not forced to attend events they seem not to enjoy, the way small children are).

The questions below should be carefully considered based on your child's age, temperament, sensory profile, and support needs, with strategies in place in case the party experience goes badly. Have a plan, then have a backup plan, and don't go it alone. Bring at least 1 other adult with you, or if you are hosting the event, assign helpers among family ands friends who know what to do and will quickly jump in if your child is having a hard time.

Things to Consider:

- Do you have to attend/throw the party? No really, think about that. What would happen if you just...didn't go? Or what would happen if your child didn't have a 4th birthday party? I'm pretty sure the earth would still keep spinning. Sometimes, the level of support that would be needed as well as the needed accommodations aren't feasible. In that case, is it better to force your child through something they are unlikely to enjoy, or to just skip it? I'm not saying forever, and this could even be a case by case decision. Small party at a neighbor's home? Sure. Huge community pool party with 6 clowns, a DJ, and group party games? Maybe not.

- Don't try to stay the whole time, instead play it by ear. For some children, they aren't excited about the cake (feeding issues are common with Autism). They don't care about the social games or group activities. They don't yet have the ability to wait, so they won't understand why they can't start ripping into set aside food or activities (and may not understand why they can't open someone else's gifts). What will YOUR child do at the party that they find fun, entertaining, and is safe? Think about that, before you take them to a 2 hour birthday party.

- Understand that vigilant supervision may be needed. This does mean dropping your child off may not be a safe option (as the party host will be super busy), and if you stay with your child, you may need to keep them in eyesight at all times. It isn't unusual for my clients to 100% "veer off from the group" during parties, only to be found sometime later upstairs in a closet, or trying to access YouTube on the family laptop, or casually digging through someone's refrigerator. These can be very embarrassing moments, that could easily be prevented by keeping a close eye on your child, especially if the party or event will be held outdoors.

- Speaking of embarrassing, there is nothing embarrassing about accommodations or supports. If you are taking your child to a party or event where they can't wear their noise canceling headphones, or freely STIM (family members, sadly, can be very judgmental about stimmy kids at birthday parties)  without being treated poorly, that may not be the kind of event you want to attend. Again, parties are overstimulating for many Autistics. So it makes sense that they will do MORE of what helps them calm or regulate in response to being at the party. In other words, if most of the kids are quietly playing Candyland, but your child is in a separate room happily squealing and jumping, while chewing on a straw, will this be a problem for other people at the party? If so, I don't think your child is the problem.

- Take preferred foods, toys, and leisure items with you. Please do not expect that your child who eats 3 foods at home, will magically attend a birthday party and chow down on Cheetos, cake, and pizza. If they won't eat it at home, they likely won't eat it at the party. Also, don't withhold stim items or comfort toys because the child is in public, and other people will see. Those favored items may help keep your child calm and comfortable, in a chaotic and loud setting. On that note, it can be helpful to bring items your child may grab, snatch, or steal, if they see it in public. For example, I worked with a boy once who loved to suck on pencils. If he was out somewhere and saw a pencil, he would try to grab it and put it in his mouth. So in that situation, I'd recommend bringing oral sensory items with you so the child doesn't need to hunt throughout someone else's home for something to satisfy that chewing desire. Think about things like this in advance, and plan accordingly.

- The biggest tip, and the one I see cause parents the most pain and distress, is this: Please don't expect your child to be a different person socially, just because you're at a birthday party. If your child is not very social at home, they likely won't be very social with 23 other kids present. In fact, they may exhibit new behaviors you usually don't see at home (such as pushing, swatting at, or running off to get away from the other kids). This can be very hard for parents to watch. So can bullying and stigma, such as if your child DOES want to join the play, and the other kids are being mean or cruel to your child. Remember that earlier tip about close supervision? It's very important to watch how your child interacts with the other children, so you can stop any bullying or rudeness in its tracks, and so you can monitor when your child's social battery is "full". Most of my clients fill up that social battery very fast.....maybe 15-25 minutes of social interaction, and they're done. And that is OKAY. Not all children want to "Go play" with their peers for hours and hours. Observe your child, redirect them to solo play or maybe a calming activity as needed, and when they seem to be all done with being around so many people, its time to head for the door so the event can end on a high note. Don't be ashamed or embarrassed to say "S/He's ready to go now. Thanks for inviting us, bye guys!". 

I hope the largest theme coming across in this post is that large events/birthday parties aren't necessarily about you, as the parent. They aren't about the party host, the games, the clown, catching up with friends, hanging out, etc. They are about helping your child be successful, in what is likely a highly overstimulating scenario.

It is important to provide your child with the support and tools they need to engage with the event, to endure the event (again, consider if it would be best not to go if they seem to just be "enduring" parties), or to excel at the event. Whether the bar is set at engagement, endurance, or excelling, will depend on your child. 

And don't lose hope and feel defeated if right now, you are at an endurance level. That doesn't mean things will always be that way! As your child grows and matures, and most importantly as they develop more skills and abilities, they may begin to enjoy parties. Maybe even, to have fun at parties.

Give it time, and be patient. Both with your child, and with yourself.

*Recommended Resources & Resources:

Autism- Managing Overstimulation

What is Overstimulation? 

Autism & Sensory Overload

Ghanouni, P., & Quirke, S. (2022). Resilience and Coping Strategies in Adults with Autism Spectrum Disorder. Journal of autism and developmental disorders, 1–12. 

Coping & Calming Skills 

Forced "Fitting In' can cause harm 

Parties & Social Events

The Mental Effort of Being Autistic 

Sensory Differences- A Guide

Read more »

Tameika Meadows, BCBA, Blog Author

Its common, its common, its common.

That is the first thing that needs to be said to any caregiver who ended up here while researching "picky eater" + Autism. You are not the only one experiencing this.

Autistic individuals (because this is not just an issue for children) exhibit higher rates of food refusal, and a more limited food repertoire, when compared to typically developing individuals (Bandini et al, 2010).

Examples? Sure.

Across my clients, I regularly see issues with:

Rigidity around meals (where to sit at the table, what plate to eat off, which spoon to use, must have the tablet in order to eat)

Food refusal challenging behavior (throwing plates, flinging cups to the floor, spitting food out, tantrums, pouring liquids out onto the floor)

Highly selective food intake (daily diet consists of less than 10 foods, likes chicken nuggets but only from a specific fast food place, will only take specific liquid from a specific sippy cup or bottle)

To define the term, a picky eater can be described as regularly refusing foods, or consistently only eating the same foods with little to no variation permitted.

Many parents of toddlers deal with a picky eating phase at some point or another, and often the child outgrows it.

So, what is the critical determining factor when it comes to Autism that tips the scale from someone who is just "picky" to a serious health problem/eating disorder and concern? Usually, it is a combination of variables that must be examined and weighed:

How old is the individual? If out of the toddler phase, how frequently is this issue happening (weekly? daily? or only at holiday meals?)

Does food refusal occur with challenging or aggressive behavior?

Is this impacting school/daycare, or the ability to go into community locations?

Will the individual skip several consecutive meals (refuse to eat across more than one day)?

Is this impacting the individual's weight, organs, toileting/digestion, skin, hair, or nutrition? Is your doctor concerned?

The key factor for seeking out intervention for this issue is when the food selectivity is causing harm to the individual. When any specific behavior impacts the health/body of the person exhibiting it, that is clinically referred to as a "self-injurious" behavior. Self-injurious behaviors should not be ignored, and often require intervention and treatment.

So what to do? 

 It may be helpful to reframe the way we view picky eaters. Sometimes families can view this behavior as their child willfully choosing to make meals a dreadful adventure. Choosing to be difficult and fling plates across the room in order to cause chaos. However, challenging behaviors often occur for complex or multifaceted reasons. Some Autistics use the term "sensory eater" and not "picky eater" to describe this issue, and explain it like this:  

"Picky eaters don’t like a variety of foods, much like the sensory eater. However, when picky eaters try new foods, it doesn’t cause a sensory overload....There is a sensitivity to textures, where children can only handle one texture, such as smooth, pureed foods. In this case, they might be able to eat yogurt, however, hand them a bag of chips or a slice of turkey and they immediately begin to gag" (www.researchautism.org).

If a specific food texture, smell, sight, or tactile experience is causing significant distress, if there are tooth or gum issues making eating painful or uncomfortable, if the individual has trouble swallowing, or if unknown allergies are present, making digestion painful or uncomfortable, doesn't it make sense for the individual to refuse a food (or eventually, any food that looks like THAT food) or exhibit excessive selectivity? Now, imagine the individual has no means to communicate how food makes them feel. Doesn't it make sense that they may cry, spit, hit or punch, or fling a plate onto the floor? 

When seeking out Feeding Intervention (which is a clinical specialty), it is important to first obtain medical rule out. This means first speaking with your doctor to discuss the issue, and see if the individual's health has been impacted. The doctor may also be able to make a referral to a qualified specialist.

Not every professional will be trained in feeding interventions, so this isn't as simple as just asking the current therapist to also target feeding. I see families do that a lot, without also asking about the therapist's qualifications to address this issue. 

It probably doesn't need to be said, but feeding challenges can have serious health complications and you don't want to gamble on unproven treatments, untrained professionals, or questionable practices. Not only could they harm your child, they could worsen/ingrain the problem even further.

SLPs, BCBAs, OTs, Healthcare professionals, and Multi-Disciplinary clinics or facilities, can all incorporate feeding intervention into therapy goals. The Children's Healthcare of Atlanta recommends the following step-by-step process for initiating feeding intervention/feeding therapy:

• Medical Screening
• Behavioral Evaluation
• Nutrition Assessment
• Oral-Motor Skills Assessment

 Remember, before seeking out therapy or treatment talk to your doctor first. Also, any feeding intervention that occurs on-site will need a caregiver training portion where the parents are taught how to implement the procedure at home/in the community.

*Further Reading:

Autism Feeding Issues

Kinnaird, E., Norton, C., Pimblett, C., Stewart, C., & Tchanturia, K. (2019). Eating as an autistic adult: An exploratory qualitative study. 

Bandini LG, Anderson SE, Curtin C, Cermak S, Evans EW, Scampini R, Maslin M, Must A. (2010). Food selectivity in children with autism spectrum disorders and typically developing children. 

Autism & Picky Eating

Problem Eating

Assessment & Treatment of Pediatric Feeding Disorders

Feeding Problems in Children with Autism

Eating Disorders Can be a Sign of NeuroDivergence

Read more »

Tameika Meadows, BCBA, Blog Author

Photo source: www.forbes.com, www.rompa.com

If you have spent any time with ABA people you may have picked up on the fact that we're all about data. We collect data, analyze data to make decisions, and look for the evidence, or data, behind strategies or techniques before we implement them.

 

So where do we stand on the issue of “sensory diets/sensory protocols/sensory interventions”? Well, many items or activities often included in a “sensory intervention” (I keep placing that in quotation marks because one of the problems is there is no set definition of this term. It means many things, to many different people), such as koosh balls, massage, tickles, dark lighting, aromatherapy, scented oils, pillows, etc., are quite enjoyable and can be very reinforcing.

Did you catch that?

Okay, I’ll say it again: Many items or activities often included in a “sensory intervention” such as koosh balls, massage, tickles, dark lighting, aromatherapy, scented oils, pillows, etc., are quite enjoyable and can be very reinforcing.

And there is the problem. “Sensory protocols” are often implemented as a response to problem behavior, in order to quickly remove the agitated child, let them de-stress, and to give them a quiet and relaxing space to gradually de-escalate. So what happens if you apply an enjoyable and possibly reinforcing activity after problem behavior has occurred? You inadvertently reinforce, or strengthen, that problem behavior.

Many center programs or schools are now setting up separate cool down areas where some type of “sensory protocol” is applied, such as the child sits on a beanbag and listens to soft music while a teacher or aide gives them deep pressure and firm touch.

These professionals often are unaware that the very protocol designed to reduce or prevent problem behavior is actually causing problem behavior to increase. Here’s a sample scenario to show you what I mean:

Child in math class.....hates math class.....child throws book across room, yells, and stands on desk...immediately removed from math class (yay!)...taken to the cool down room...now laying on a soft  blanket, sipping water, and holding a koosh ball...awesome!

For all the parents and educators: there is NOTHING wrong with using preferred items to bring about behavior change. Just pay attention to WHEN you present these items/activities. 

Preferred, enjoyable items and activities should be presented when desired behaviors occur and not when problem behaviors occur. When problem behaviors repeatedly occur, your best plan of action is to conduct a FBA, and create a Behavior Plan.  

So why do “sensory protocols” or other interventions without empirical support persist, or even gain traction among professionals and educators? What is the lure? Well, Lilienfield et al (2015) provide a few answers to that question:

• Parents are often desperate for Autism treatment options
• Behaviors often wax and wane naturally as children age and mature, so it can seem that sudden short term improvements are due to a particular treatment or intervention
• The internet and technology brings a mass of information to people quickly, and most people would rather read something online than in a research article
• At a psychological level, once someone believes in something it can be quite difficult to convince them otherwise

I absolutely agree that fad treatments can be very alluring. It’s like that fast food place that you know you shouldn’t eat at, but the food is cheap, fast, and convenient. 

Based on my experiences with this issue, here are the main captivating lures I see when it comes to “sensory protocols”:

The Lure	The Truth
Typically easy or quick to come up with, can be implemented or created by anyone	Most quality, evidence based interventions require the use of credentialed or licensed professionals who have specific expertise
Materials/objects are often cheap and readily available, some can even be made	Gather together all of these cheap and readily accessible items and use them as reinforcers, not as a “treat” that only comes out after the child has aggressed at someone. If the only time the child can access all these amazing items is after they have become severely disruptive, then Houston, we have a problem
Can appear to have an immediate effect, or in the short term can appear to be working	Especially for an escape maintained child, yes….these types of interventions will appear to work like magic! Unfortunately, that is only until the child gets sent back to class or a high demand situation. What I typically see is a high cycle of: behavior, calm down room, behavior, calm down room, etc. Another important point to consider is do you plan to create a sensory room in all environments? No? Then what happens when problem behaviors occur at the beach, the post office, or at Grandma's house?
A “sensory room”, particularly in a school, can serve as negative reinforcement for the teacher (escalated and disruptive student is quickly removed from their   classroom)	If at all possible, it’s best not to remove the child from the location where problem behavior began, or for another educator/professional to come to the “rescue” and remove the student. This sends a message to the child you don't want to send: that you cannot handle the child’s behaviors, and if they want to quickly leave a certain setting all they have to do is exhibit significant problem behavior
If the child enjoys it, what’s the harm?	Lemon treatments waste money, time, efforts, and energy that could be directed at effective interventions based on data. They can also shape up problem behaviors and make them far worse, or more entrenched over time. Lastly, during the time the child was engaged in the sensory intervention and removed from the learning setting, effective instruction was paused or delayed.

Reference: 

The persistence of fad interventions in the face of negative scientific evidence: Facilitated communication for autism as a case example

Lilienfeld SO, Marshalla J, Todd JT, Shane HC (2015) Evidence-Based Communication Assessment and Intervention

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Tameika Meadows, BCBA, Blog Author

 Recommended Reading: Emotional Intelligence

I covered this topic a little in my Top Ten post, but coping skills are often a skill deficit I see across many of my clients regardless of their age or cognitive ability. 

In the young clients this may look like a screaming tantrum, and in the older clients it may look more like kicking holes in the walls of their home. The same issue is fueling both outbursts: challenges with Emotional Regulation.

I find that parents and teachers can often identify consequent strategies, or those techniques they should apply once the problem behavior is occurring. It’s identifying antecedent strategies, or ways to prevent the problem behavior that many people don’t think of, or don’t plan for. This is usually reflected in the kinds of questions I get asked, such as “What do we do when s/he does (behavior)” and rarely “What can we do to prevent (behavior) from happening?”

Coping skills teach the skills of self-management, labeling one’s own emotional state, controlling impulses, engaging in thoughtful behavior, and making good choices. 

Despite how it may appear, most individuals don’t go from “0-60” in the blink of an eye. Emotions have been simmering inside and building, sometimes for hours, sometimes for days, and what you or I may consider a harmless event can set the person off. 

To anyone observing, it would seem like the behavior came out of nowhere. My vocal clients will often tell me about behavioral outbursts they had, and something that happened sometimes days before the outburst was a trigger. Maybe a kid at school called them a name, and they perseverated on that for days before exploding at home when they were told to turn off a video game. 

Children who have difficulty regulating their emotional state are easily triggered. There are many, many things that cause them to become frustrated, angry, or upset, and sometimes these triggers change without warning. For example maybe Chris usually gets upset when babies cry on TV, and then one day at the mall a baby in a nearby stroller sets Chris off into a full meltdown.

 It isn’t unusual that triggers grow, or generalize, to the point where parents or teachers can spend the whole day putting out behavioral fires or desperately trying to eliminate stressors from the child’s environment (which in some settings, is nearly impossible to do). This can put an incredible amount of stress on the caregivers.

If this is something you are currently struggling with in your child or a student, let me suggest approaching this problem in a different way. What if you could teach the individual to identify when they have been triggered, to select an option to de-escalate, and to implement that choice? Well, you can.

Most successful adults have a variety of coping skills that are used every day, across a variety of situations. We all have things we do when we feel ourselves getting stressed at work or irritated with our spouse. Most of us don’t need someone to tell us to go “calm down”. This is because we have the ability to identify what triggers us and make a decision about how to handle it. Unfortunately disabled individuals may not have this ability.

 I sometimes describe this to a family by saying that when their child gets upset, they open a cabinet of options in their mind filled with choices like “break something”, “hit my brother”, or “punch a wall”. So saying to that child that they need to “make better choices” when they are angry doesn’t mean anything, because they don’t KNOW any other choices to make. So my job is to fill up that mental cabinet with multiple appropriate choices for the child to choose from when they need to calm down.

Helping children learn coping skills can’t just be about what to do when the problem behaviors occur. There has to be a focus on preventing the behaviors, and practicing the strategies both when the child is calm, and when they are escalated. Use prompting and reinforcement to teach the strategies to the child, and help them to understand that not being in control of their emotions has consequences (disciplinary action at school, losing privileges at home, being removed from a preferred Community location, etc.).

Here are some helpful strategies for teaching coping skills. This information may need to be modified depending on the age of the individual, and cognitive ability. 

Remember, practice is necessary! Use repetition & reinforcement (the two R’s!) to teach the skills, individualizing the strategy for the specific person:

Strategies:

• Silent counting – Tell the individual to close their eyes and count to 10 or 15 in their head. This can provide the individual with needed time to quietly calm down, and can give them something to focus their thoughts on.
• Teach hobbies – Teach the child leisure skills or hobbies that they can engage in when they begin to escalate and need to “take a break”. Examples include writing in a journal, doing a crossword puzzle, playing Solitaire, doing a puzzle, stringing beads, or folding clothes (this can be very calming, and it is also a helpful life skill).
• Meditative Deep Breathing – Have the individual breathe in deeply as he or she says “Calm in”, hold the breath for a moment, then release the breath slowly as he or she says “Anger out”. Repeat.
• Close Eyes & Imagine- Close eyes and imagine a peaceful scene. The teacher or parent will narrate a peaceful scene (or remain quiet if the child prefers). For example, “We’re at the beach watching the waves go in and out…in and out…in and out. The sky is so blue, and the sun feels good on your face”.
• Progressive Muscle Relaxation – Practice tightening and then relaxing various muscle groups from the toes all the way up to the head. Clench/tighten the muscle group tightly, hold for 3 seconds, and release. Repeat.
• Slow Stretching – Stretch arms over head, to the side, and down to the floor for a count of 5 seconds. Repeat.
• Exercise – Take a walk, do yoga movements, run on a treadmill, do 10 jumping jacks.
• Distraction – Put the child on task, by having them complete a simple motor activity that does not require language (even a verbal child may be unable to communicate once they are escalated). Examples include: coloring, blowing bubbles, squeezing objects, sorting items, filling a container with blocks, etc.
• Write down/Draw a picture of how you feel – Encourage him/her to write down words that describe how he or she feels, or to draw a picture.
• Fast/Slow – Have Him/her complete simple motor actions very quickly, and then very slow. Examples include rubbing hands together, squeezing thighs with palm of hands, making and releasing fists, etc.
• Whisper Only – Sit (or lay down) in a darkened area with him/her and speak only in whispers. It may be helpful to let the individual lay down on pillows or across a bean bag chair.
• Rhythmic activities – Bouncing, rocking, jiggling, pacing, swinging (it is important not to inadvertently teach the child that engaging in problem behavior is how to request these activities).
• Listen to Music with Headphones – Allow him/her to listen to calming music in a darkened room with headphones/earbuds on. It may be helpful to also allow the individual to wear a blindfold/eye mask.

 

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Tameika Meadows, BCBA, Blog Author