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Tag: autism parenting

Jennifer LaRocco

Understanding The Connection Between Autism Spectrum Disorder and Cerebral Palsy

April is a time when we come together to recognize the diverse experiences of people living with autism spectrum disorder (ASD) and their families, and we encourage the momentum to continue throughout the year. Autism is a complex neurodevelopmental condition that affects how a person communicates, interacts with others, and experiences the world around them. As we delve into the intricacies of autism, it’s essential to understand its relationship with other conditions, such as cerebral palsy.

The Intersection of Autism and Cerebral Palsy

Cerebral palsy (CP) is a group of neurological disorders that affect movement, posture, and muscle coordination. While CP primarily impacts motor function, it can also co-occur with other developmental conditions, including autism. Research suggests that approximately 6% to 15% of individuals with CP also have a diagnosis of autism, highlighting the overlapping nature of these conditions.

The co-occurrence of autism and cerebral palsy presents unique challenges for each person and their families. Understanding the relationship between these conditions is crucial for providing comprehensive care and support. While the exact mechanisms underlying their co-occurrence are not fully understood, a couple factors may contribute to their association:

Common Risk Factors – Both autism and cerebral palsy have shared risk factors, including genetic predisposition, prenatal complications, and environmental influences.

Neurological Differences – Research suggests that disruptions in brain development may contribute to the development of both conditions. Structural and functional abnormalities in the brain can manifest as diverse symptoms associated with autism and cerebral palsy.

Navigating Dual Diagnoses

Receiving dual diagnoses of autism and cerebral palsy can be overwhelming for individuals and their families. It’s essential to access comprehensive support services and resources to address the unique needs associated with each condition. Here are some steps to navigate this journey:

  • Seek Multidisciplinary Care — Collaborate with a team of healthcare professionals, including pediatricians, neurologists, developmental specialists, and therapists, to develop a personalized treatment plan tailored to your child’s needs.
  • Access Early Intervention Services — Early intervention is critical for optimizing outcomes for children with autism and cerebral palsy. Explore early intervention programs that offer therapeutic interventions, educational support, and family-centered services.
  • Connect with Support Networks — Joining support groups and connecting with other families facing similar challenges can provide invaluable emotional support, practical advice, and shared experiences. Organizations like Autism Connection of PA offer resources and community networks.

Autism Connection of Pennsylvania thanks Jennifer LaRocco, Editor & Coordinator at Cerebral Palsy Guidance, for sharing her expertise through this insightful guest blog post. Jennifer’s contribution sheds light on the intricate relationship between autism spectrum disorder and cerebral palsy. As we commemorate April’s focus on autism, let’s keep the momentum going throughout the year. Thank you, Jennifer, for your dedication to raising awareness and fostering understanding in our community.

Please visit Jennifer’s page on the Cerebral Palsy Guidance website to learn more.

fries and chicken nuggets with sauces on side

Four Quick Tips for Picky Eaters

People have all kinds of reasons for food aversions or avoidance.  Sensory (like experiencing strong or “weird” tastes, loud noises that crunchy foods make when chewed, uncomfortable pressure on teeth and jaws when chewing), motor (slippery or soft foods may hard for a person to control in their mouth without accidentally gagging) or negative memories like choking or being at a sad event when eating a food, all may affect one’s “food future”.

Some people may also have obsessive compulsive disorders that dictate how, when, and how much they eat, or hidden mental and emotional rules dictating things like if foods are “allowed” to touch each other, be eaten “out of order” or that one must avoid eating an odd number of  things (like grapes) vs. an even number.  Best wishes to the family chef – or to you yourself – if food variety is limited by disabling conditions.  But fear not, here are some ways which may help anyone eat a wider variety of foods.

1. Put favorite foods with all the food you are offering

Picky eaters may gravitate to certain foods, and this can lead to making special dishes just for them. Try putting their favorite foods as part of a selection of a variety of foods. Putting everything in the middle of the table creates a sense of similarity rather than sending the message, “Your food is different from our food”.

Real family experience: Michael’s daughter, a picky eater, always stuck to her favorite chicken nuggets. By placing them alongside a variety of dishes, he noticed she became more open to trying new things, feeling like her choices were part of the family feast.

child selecting food from table

2. Add flavor little by little

Choose a preferred food and add a tiny bit of flavor in the mix. For example, a person who loves plain pasta with no sauce might enjoy having the option to dip the pasta, or simply add a very small, almost undetectable amount of sauce into the pasta to give it a subtle hint of flavor. If the hint of flavor is tolerated, gradually add more over time.

Real family experience: Eva, who preferred plain pasta, discovered a love for subtle flavors when her mom introduced a small amount of sauce. Gradually, she started experimenting with different sauces, turning mealtime into a flavorful adventure.

child thinking looking at pasta

3. Deconstruct complicate dishes

Serving a dish that has multiple ingredients can look and taste overwhelming. Try offering ingredients that they can choose and assemble as they like. For example, taco night might feature tortillas alone with a separate bowl of each filling. People could eat each item separately, or combined as they choose. 

Real family experience: The Smith family found that deconstructing lasagna into separate components allowed their son, with sensory sensitivities, to enjoy the meal. He happily assembled his plate with the ingredients he liked, turning a potentially overwhelming dish into a customizable delight.

lasagna ingredients on table

4. Add variety to familiar foods

Try favorite flavors or textures in different foods, and note how they are similar. “These are raisins. They’re soft, sweet and chewy just like the gummy candies you like.” Or “You love Goldfish crackers. Here are cheesy square crackers that can go with them.” You also might try using a favorite dip as a way to try new food “dippers”. Begin with their favorite food and dip, say carrots and ranch dressing, then add a new food, like one piece of celery, to allow a little more exploration.

Real family experience: Mark’s son, a fan of Goldfish crackers, was introduced to new flavors by pairing them with different-shaped cheesy crackers. The explanation, “These are like the ones you love,” made trying new snacks feel like a natural extension of their preferences.

goldfish crackers and round crackers

 

Four tips for picky eaters details in blog post

By experimenting with these family-friendly tips, you can turn the dinner table into a joyous experience for everyone. Remember to include favorite foods alongside a variety of options, creating a sense of togetherness rather than emphasizing differences. Gradually introduce flavors to cater to individual preferences and consider deconstructing complex dishes for a more manageable experience. Adding variety to familiar foods and using favorite dips as a gateway to new tastes can further enhance the positive, inclusive atmosphere at the table. Celebrating each unique palate is the key to creating lasting memories and fostering a sense of togetherness during mealtime.

peaches cut up into a bowl of cream

The Peaches and Cream Autism

Years ago, my autistic daughter participated in what they called a special needs sporting event. I was quietly cheering her on, and another parent asked, “What is she doing here? Helping?” I shook my head and explained that she, too, was playing as a child with a disability.

“What’s wrong with her?”

“Nothing is wrong with her. She just has autism.”

The other parent’s eyes glazed over as she remarked, “Not the real autism. She has the ‘peaches and cream’ autism.”

I gave no response.

This brief, somewhat painful interaction has stuck with me for more than a decade. First, the image of peaches and cream as it relates to levels of perceived heightened ability makes no sense. Second, the inner workings of the mind and body are generally difficult to observe because they are not overt. So those with the perceived simple “peaches and cream” autism seem to have no place. They are too visibly able to fit in with those who have overt disabilities, and too invisibly disabled to seamlessly connect with nondisabled peers.

Where do we land?

Unpacking the Peaches

Over the years, I’ve ruminated on the peaches and cream autism statement, and I have repeated the nonsensical phrase many times. Sometimes in an effort to try to figure it out; sometimes in an effort to gauge other’s understanding. Results were mixed.

My younger, non-autistic daughter, much like me, was trying to unpack the concept.

And she did, in a way that finally made sense. She being a mere 15 years old, made the revelation extraordinary.

“Maybe you have the peach fuzz autism too, Mom.”

“Peach fuzz?” I laughed. “It’s the ‘peaches and cream’ autism. And you are probably right.”

“Oh! I thought you were saying peach fuzz because it’s light and soft and hard to see.”

A large pile of peaches

Light and soft and hard to see

Peach Fuzz

The way my mind works, I pictured a peach with its soft, fuzzy outer skin covering the fruit’s flesh. This led to an exploration and possible conclusion to the peaches and cream conundrum. And it makes sense in relation to autism and hidden differences.

The peach’s fuzzy exterior has puzzled experts, with no definitive explanation for its presence. However, one prevailing theory suggests that this textured coating serves as an additional safeguard for the delicate peel, which is susceptible to premature rot.

Peach fuzz exists even though it is difficult to detect, and it exists for good reason.

When I shared my findings with my daughters, the younger one sighed. “Peach fuzz on the face, I meant.”

We’re still looking into it.

parent sitting behind an infant who is in a crawling position. Mom is looking at the baby and the baby is smiling broadly both facing the camera

Crawling – An Important Milestone in Human Brain Development

Parents of autistic children often share that their child did not crawl, and this factor is commonly underestimated. Those who have little ones who seem to simply sprout from scooting to standing to walking (even delayed) may feel as if the child has made great strides, but it’s important to recognize that crawling helps the brain develop. While scooting is absolutely adorable, crawling affects the brain in different ways. 

Baby in a scooting position

Scooting is fine but encourage crawling, too

Crawling as a Foundation for Cognitive and Motor Skills

Crawling plays a vital role in the early stages of human brain development, laying the foundation for various cognitive and motor skills. As infants begin to crawl, they engage in a complex process of sensory exploration and integration. This physical activity enhances the brain’s ability to create neural connections, facilitating the development of spatial awareness, hand-eye coordination, and proprioceptive skills.

Crawling also fosters the growth of the corpus callosum, a bundle of nerve fibers that connects the two brain hemispheres, promoting communication and information exchange between brain regions. The symmetrical and rhythmic movements involved in crawling have been shown to contribute significantly to the development of a well-connected and efficient brain architecture.

Studies on Crawling and Early Brain Development

Numerous studies have delved into the significance of crawling in early brain development. Research conducted by Karen Pape, a pediatric neurologist, highlights the essential role of crawling in forging neural connections and its influence on overall cognitive and motor development. A study published in the Journal of Neuroscience reveals that crawling babies exhibit enhanced spatial memory and a greater ability to perform tasks that require coordinated movement. Additionally, Neuroscientists such as Dr. John Ratey have explored how physical activities like crawling contribute to the release of brain-derived neurotrophic factor (BDNF), a protein essential for neuroplasticity and cognitive growth.

Encourage Crawling

Encouraging crawling in infants and providing them with safe and supportive environments to explore their motor skills can have far-reaching implications for their cognitive development. As demonstrated by scientific research, crawling sets the stage for improved brain connectivity, essential motor skills, and spatial awareness. And understanding the importance of crawling can guide parents, caregivers, and educators in fostering a child’s early development and providing them with a strong foundation for future learning and overall brain health.

Activities that Mimic Crawling

Activities that mimic crawling can help infants develop their motor skills, coordination, and strengthen their muscles. While infants may not be crawling independently yet, these activities can encourage them to practice the movements and prepare them for the milestone. Here are some activities you can try:

  1. Tummy Time: Place your baby on their tummy on a soft and safe surface. This position encourages them to lift their head and chest off the ground, strengthening their neck, back, and shoulder muscles – essential for crawling.
  2. Baby Plank: While your baby is on their tummy, gently support their upper body by holding their arms. This will help them practice the plank-like position that they will use when crawling.
  3. Rolling Games: Help your baby roll from their tummy to their back and vice versa. This motion helps them build core strength and improves their ability to change positions.
  4. Crawling Tunnel: Create a soft and safe crawling tunnel using cushions or blankets. Lay your baby on their tummy at one end and encourage them to move through it using their hands and knees.
  5. Crawl-and-Reach: Place toys just out of your baby’s reach while they are on their tummy. Encourage them to move towards the toys by crawling or scooting.
  6. Parent-Assisted Crawling: Sit on the floor and position your baby on your legs facing you. Gently help them move forward by holding their hands and guiding them through the crawling motion.
  7. Mirror Play: Place a baby-safe mirror in front of your baby while they are on their tummy. Babies are often fascinated by their reflections and may try to reach out to the “other baby,” promoting movement.
  8. Carpet Slide: Place your baby on a soft carpet or mat and gently pull them across the floor, allowing them to experience the crawling motion without using their own muscles.
  9. Crawling Race: If you have friends with babies around the same age, organize a mini-crawling race. Line up the babies and encourage them to crawl towards a fun toy or their parents waiting at the other end.

Remember, each baby develops at their own pace, and it’s essential to create a safe and supportive environment for them to explore and practice these movements. Always supervise your baby during these activities, and if you have any concerns about their development, consult with a pediatrician or child development specialist.

Resources:

  1. Pape, K. E. (2008). The role of early general movement assessments as predictors of cerebral palsy. The Neurologist, 14(6), 331-340.
  2. Adolph, K. E., & Berger, S. E. (2006). Motor development. Handbook of child psychology, 2, 161-213.
  3. Lobo, M. A., & Galloway, J. C. (2013). Crawling and walking infants elicit different verbal responses from mothers. Developmental science, 16(6), 894-905.
  4. Ratey, J. J. (2008). Spark: The Revolutionary New Science of Exercise and the Brain. Little, Brown Spark.
two empty coffee cups on a red background

Bereft of Coffee

While waiting for the coffee to finish brewing in the office kitchenette, my eyes fixated on the stream of coffee entering the carafe and the tranquil sounds it made in anticipation of the final surge of steam as the brewing finished.  This concentrated focus drowned out a number of elements that flooded the surroundings, flickering lights, multiple distant voices, phones ringing, and the general energy of movement within the maze of cubicles.

During the reverie, I saw a peripheral figure approaching to my left, and a soft, clear voice flowed into my ears, “Good morning! How are you?” and at that moment, I straightened and turned my entire torso toward the person asking the question, stopping like a machine that produced speech. I heard my own voice say, “I am bereft of coffee.” And all memory of the moments following would never gel in my mind because I could only fixate on my social ineptitude.

Bereft of coffee. Who says that? Did you even make eye contact?

Bereft

Bereft is not a word used often in everyday conversation. It’s a complex, haunting word that comes from bereave, a term of loss and mourning that communicates that something is lacking.

A graph showing the usage of the word bereft over the years with a slight uptick in 2019

Yes. I looked up the use of the word “bereft” over time. It really took a dip in the 1940s and I’ll probably try to find out why.

In the morning kitchenette interaction, the thing that was lacking was coffee, and the choice of the word bereft in this specific case seems a bit dramatic. The word may also communicate on some level that I really want to interact on your terms, but I just don’t know how. It takes a great deal of concentration and sometimes the words just pour out and I wish I could collect them and rearrange them into something, well, “normal.”

The coworker who kindly asked the question was likely to think, “Well, that was an unusual response,” and the moment would vanish along with the multiple mundane things that occur in a nondescript workday. But for me, this common office interaction became a source of shame that lingered for months. This wave of embarrassment was probably unnecessary but it is something that people on the autism spectrum face when they are aware of basic communication differences that can sometimes lead to misunderstanding.

Full Cup

When we have people who truly understand communication differences, we find that they often see these types of interactions insightful, and sometimes endearing. While lamenting to a trusted coworker about my perceived social awkwardness, she said how lovely it was that I was able to express such a deep love for coffee, and in turn, a deep appreciation for words. Bereft is a beautiful word that can express longing for acceptance, and even longing for something comforting, like a cup of coffee.

 

 

Image of a laptop with Autism Connection logo and text saying Virtual Workshop

How to Avoid Medication Mishaps

Carol Miller, RN/BSN, Director of Clinical Services at Achieva and Missy Knox, RN will talk about avoiding medication mishaps.

The presentation will:

  • Review questions to ask when starting a new medication
  • How to form good medication habits,
  • Medication storage, packaging, and disposal options
  • How to identify and react to medication emergencies

They will also briefly touch on genetic testing and how this may influence your medications, and there will be time for questions after the presentation.

This is a free virtual workshop, but registration is required. Register here.

Carnegie Science Center Logo

Miniature Railroad & Village® Sensory Friendly Tours

Join expert Miniature Railroad educators on a special behind-the-scenes tour through one of the Carnegie Science Center’s most popular exhibits! All tours will occur outside of regular museum hours. Designed for visitors with sensory sensitivities and/or other disabilities, these tours are personalized and free of crowds and loud noises. Each tour date has a very limited number of spots available, to maintain a welcoming, low-stimuli environment.

Tickets for this opportunity are free, regardless of Membership status, but require advance reservations for all members of your party. This is an all-ages appropriate event. General admission to the museum is not included, but can be purchased separately for the Tours that occur before museum open. To register, please use the buttons below, call 412-237-3400 or email [email protected]