If at First You Don't Succeed, Wait, Wait and Try Again - Autism Awareness
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If at First You Don’t Succeed, Wait, Wait and Try Again

I had an eye opening experience with my daughter, Julia, last month. She had a doctor’s appointment for a physical assessment that was required in order to enroll in a fitness course. Her doctor told her she had low blood pressure, asked if she had any symptoms, and said that she may be anemic. I saw the surprise in her eyes and felt worried that this information might cause her great anxiety. Later that evening, Julia announced that she needed to add fruit to her diet to improve her health. I was thrilled at her revelation as I have been trying to get her to eat fruits and veggies for 22 years, but have had no luck in introducing them.

We started with a banana – she loved it. Next, Julia tried blueberries and she thought those were great too. She said, “Mom – fruit is fantastic!” For the past 4 weeks, we’ve been adding new fruits such as raspberries, apples, pears, and watermelon every 2 – 3 days. Fruit is now a part of her daily breakfast. I am still bewildered as to why this happened and it has really made me think about what the reasons might be.

I told this story to Kelly Mahler (OT) who presents, researches, and writes about interoception. I asked her opinion on this and here’s what she said:

I was just talking to my friend and colleague Kim Clairy (autistic OT) and we were talking about how sometimes we need to experience a change in the way our body feels in order to really notice how it is feeling. For example, not noticing how overwhelmed your body feels in an environment filled with sounds until you put noise cancelling headphones on and experience a drastic change in the way your body feels—suddenly much calmer, more organized or whatever is true for the person. Sometimes the change helps us realize how badly our body felt prior—the change can help us make better connections. Perhaps the discomfort becomes the norm until we do something that helps our body feel better.

As parents, we can feel frustrated and worried when progress, skill acquisition, and change are slow. As professionals, there is pressure to meet school IEPs outcomes or client goals within an organization. I get many emails from concerned people wondering if certain skills will ever be mastered such a toileting, eating a varied diet, or being able to read. All of this has got me thinking about how and why does change occur. How can we set the stage for success that may come at a much later time?

Predictability

Predictability is the ability to know and understand what is coming up next in your day. Many of us feel less anxious when we know what is expected of us, and how we are going to navigate our day to day lives. Predictability is a way for someone on the spectrum to assuage their anxiety over the unknown, and empower themselves into their daily tasks. For some of the spectrum, not knowing what to expect at a new school, in a new restaurant, or while on vacation can make life unbearable for themselves and their caregivers.

Creating predictability is a great way to address anxiety and fear over change and new events. Autistic individuals benefit highly from regulated and predictable schedules, and may need help to overcome anxiety around any transitions and change by finding and highlighting areas of predictability within them. While communication is an issue for many autistic people, creating predictability with routines and visual supports, and calming anxiety can go a long way towards creating an environment that supports the most communication possible. When anxiety is in check, a person is more adaptable, flexible, and able to learn and retain information.

Critical Mass – Time for Practicing

Neurotypical people gain critical mass in the areas of social, communication, and basic living skills simply by implicit learning, not through being taught in school. For autistic people, they need explicit instruction in these areas throughout their school years and beyond in order to gain these skills. They won’t learn these skills without direct instruction. This is what makes the leap out of school and into employment or independence so difficult – these skills haven’t been mastered because they are not taught in school like academics are. Reading, writing and mathematics may be acquired upon graduation, but the social, communication and living skills pieces are missing, which make a successful adulthood difficult to achieve.

Providing opportunities to practice skills across a wide variety of contexts will eventually lead to mastery and generalization of that skill. I see this happen all the time because skills practiced at home are then taken to a job or independence in self-care is increased. Remember – there is no cap on learning and it happens continually over the lifespan.

There are many ways to provide these opportunities for practice such as volunteering, doing chores, and incorporating interests into real life opportunities. For example, my son loves numbers. The great thing about numbers is that they are everywhere. I started using the numbers interest to teach how to use a self check-out at the grocery store, how to read a price tag, finding library books through call numbers which also taught decimals, telling time digitally, reading a gas pump, money, counting bottles for recycling – just an endless list of practical tasks. The practice of reading numbers comes up continually. As a result of this constant practice in real life situations, Marc knows his numbers into the millions now.

Building Body Awareness – Interoception

Interoception is the sense that helps a person understand what is going on inside of the body like hunger, thirst, feeling hot or cold, fatigue, or a full bladder. It also affects the ability to interpret emotions; butterflies in the stomach may not be felt as anxiety or nervousness. In Julia’s case of adding fruit to her diet, she may not have known how much better her body would feel if she began eating fruit. Once she started eating it, she may have felt the difference in her body but she isn’t able to articulate that feeling yet. She continues to be motivated to eat fruit so I believe she has felt a connection.

Understanding interoception can be the key to interpreting unexplained behavior or difficulties with bodily functions. Building interoceptive awareness can help a person be able to self-regulate and use tools or strategies that help them feel their their best.

The LILA Principal

This is my own acronym that I created which stands for Leave It Lying Around. Leaving things out to increase exposure allows for children to discover something in their own time, way, and at their own pace. Exposure to a wide range of activities, particularly ones are related to personal interests, can build connections, support motivation and increase confidence. Repeated exposure also creates familiarity and predictability which reduces anxiety.

When my son Marc was 13, he began to work at a local Farmer’s Market once a week. He was exposed to vendors selling all kinds of produce in a sensory friendly environment. The market was outdoors in natural light with no loud music. The produce displays were small and each vendor only had a few items in their stalls. Marc began to connect with the vendors and feel a sense of pride working at this job. He was then more open to trying foods he had seen “at work”. He made the diet leap at the age of 16 and began eating a wide variety of fruits and vegetables, increasing from 15 foods to so many that I’ve lost count. His next food jump was at age 19 in a horticulture class. He grew his own vegetables and the class made recipes from them such as soups and salads – these are our now a part of his weekly meals for the past 5 years.

Learning, personal growth and change happens throughout the lifespan. Allowing time for practice, repeated exposure, and putting the correct supports and scaffolding around an autistic person helps them build confidence, resilience, flexibility and self-esteem. No individual will develop at the same pace and the time it takes for skill acquisition will vary greatly. There are no time limits or finish lines to cross, just a continuous journey. My adult children still surprise me every week.

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