A diagnosis of Autism Spectrum Disorder means a major change in your child’s life, and your own. You may feel overwhelmed, left with no support, angry, that it’s unfair, or that it’s even your fault somehow (it’s not).
In the next few issues of “Thrive,” we want to help you deal with those feelings. We’ll talk about a grieving process many parents undergo when receiving the diagnosis, ASD statistics, different cultural beliefs concerning autism, working with schools, public behavior, organizing a treatment plan, and more.
Let’s start with some statistics.
Statistics about Autism Spectrum Disorder
The CDC’s “Autism and Developmental Disabilities Monitoring Network” has identified about 1 in 68 children with autism spectrum disorder (ASD). 1 in 68 translates to millions of children across the globe. Millions of parents dealing with this too.
Thanks to the research, we also know:
- ASD occurs in all racial, ethnic, and socioeconomic groups.
- ASD is about 4.5 times more common among boys (1 in 42) than among girls (1 in 189).
- Studies in Asia, Europe, and North America have identified individuals with ASD with an average prevalence of between 1% and 2%.
- About 1 in 6 children in the United States had a developmental disability in 2006-2008, ranging from mild disabilities (speech and language impairments) to serious developmental disabilities (intellectual disabilities, cerebral palsy, and autism).
Looking at statistics like these, we can say one thing: You are not alone.
Why Parents Feel Afraid of an Autism Diagnosis
You are never prepared for a diagnosis of ASD. It’s a shock, and it will trigger intense feelings. Many questions will run through your mind.
What happens now?
Why did this happen to my child?
Why did this happen to me?
What will my family/friends/community think?
What will our life be like now?
It’s akin to a grieving process. The “old life” you knew must change. No going back. It’s unfortunate, but also inevitable.
Give yourself time – time to work through your feelings, time to seek help, and time to adjust to the reality of what’s before you.
Please be careful about denial. We’ve had families admit that despite their child’s behavior issues, they kept putting off getting a diagnosis because they just couldn’t face it. They even cut themselves off from friends & family. By the time they did get a diagnosis, the child was 4 years old, not speaking at all, and having severe behavior problems.
The Autism Speaks website has a wonderful page on the grieving process, with recommendations on how to work through it, and taking care of yourself as well as your child. We encourage you to read everything there: Autism & Your Family – Autism Speaks
Cultural Beliefs and Autism
Our families come from many different cultures. When it comes to autism, we’ve seen that different cultures have different perceptions of ASD. Some place a higher stigma on a child with autism (and their family) than others.
Industry research has backed up our experiences. Here are some examples:
- Many parents of Caribbean descent expect their children to toilet train much earlier than Caucasian parents. But Caucasian parents expect their children to name their colors much earlier than Caribbean-descent parents.
- South Asian parents are more likely to identify delays in socialization than delays in speech. Caucasian families are more likely to detect general developmental delays, or regression in language skills, rather than social deficits. This suggests that clinicians should ask about both socialization and communication, if parents bring up concerns in one of these areas.
- In an article titled, “The Stigma of Autism,” a Palestinian mother of a boy with autism described how some family members reacted. “They were telling us to get rid of him!”
- A quote from the same article: “[Some] Koreans consider autism to be a stigmatizing hereditary disorder; autism (chap’ae) impugns the child’s lineage on both sides and threatens the marriage prospects of unaffected relatives. As a result, autism is often untreated, misdiagnosed as attachment disorder, or unreported in records.”
- A New York Times article, “Working to Combat the Stigma of Autism,” talked about Korean-Americans who cut themselves off from their community. In one case, this meant a boy with autism would not receive a diagnosis until 7 years old.
What this tells us is, one’s cultural beliefs about autism can exert a strong influence on how you deal with it.
Cultural Beliefs Affect Treatment Plans. Please Be Open about Them.
It’s not our business to tell you what or how to believe. We’re only here to help your child, and help you with them in turn.
We do know that cultural factors like traditional values, attitudes toward individuals with disabilities, religion, and language play a major role in the development and implementation of a treatment plan.
All A is for Apple clinicians encourage parents to consider their cultural beliefs, and to understand how they may affect their involvement in their child’s treatment. We must have a good understanding of the child’s home environment before deciding on treatments.
Success depends on a good relationship with you, the parent. Be prepared to fully disclose your beliefs and your concerns. Knowing everything we can about your child, and about where you’re coming from, is critical.
It makes a big difference in your child’s diagnosis. Their treatment. And ultimately, your family’s happiness.
If you or someone you know is afraid of an autism diagnosis, we encourage you—talk with an A is for Apple supervisor. We will do everything we can to answer your questions, and to help you work through those feelings. Remember – you are not alone.
Next issue we’ll discuss the stigmas in more details, and how to deal with them.
See you next month!
Autism Tips: Potty Training I – Recognizing Readiness Signs
Tired of changing diapers? Wondering if your child is ready for potty training yet?
Many parents start training when their children are between 2.5 and 3 years old. Some children aren’t interested until 3 or 4. “Toilet abilities are a central part of a child’s development and are necessary for acceptance in social environments and independence (McManus, Derby, & McLaughin, 2003).”
To prepare for toilet training, you must first assess the child’s readiness. Consider these 3 areas when evaluating whether it’s time to start: Cognitive Signs, Physiological Development, and Motor Skills.
You don’t have to wait to check off every single item. But do take some time to think about your child’s readiness. We’ve provided a list of questions and considerations for each category below:
1. Cognitive Signs
- Does the child follow simple, one-step directions? (e.g., stand up, sit down, pick up the toy, etc.)
- Does the child communicate needs verbally or by other means? (e.g., signing, communication devices, or pictures)
- Sitting and attending to an activity for 2-5 minutes at a time? (e.g., sitting down for coloring activity, playing with Play-Doh, etc.)
- Learning to label objects? At around 2, a child will learn to label bodily functions. Poo and pee are exciting new words.
- Developing body awareness? Child begins fidgeting, jumping up and down, or pointing dramatically to diaper or attempts to remove a soiled diaper.
2. Physiological Signs
- Does the child have the ability to voluntarily control the sphincter muscles, enabling them to “hold it” for a short period of time or until they get to a toilet?
- Does the child have long periods of dryness (for at least one hour)?
- Does the child exhibit signs of urinating or having a bowel movement (straining, squatting, pulling at pants, hiding in the corner, etc.) that allows you to know when they are eliminating?
3. Motor Skills
- Can the child pull his/her pants up and down without assistance?
- Can the child wash and dry his/her hands?
- Can your child sit on the toilet and stay on the toilet for at least a few seconds?
- Can the child imitate the motor movements of others?
If you answered “Yes” to most of these questions, then your child is probably ready to begin potty training! If you answered “No,” that is all right too. Ask your Program Supervisor and/or Clinical Director for their input.
According to Dr. Joshua D. Sparrow (2004), the most important step is to let your child’s behavior guide you, and let the challenges become his/her own. You cannot speed up the learning process. Allowing your child to learn at his/her own pace is far more effective. If children are pushed to use the potty before they’re ready, it may take them longer to learn, and they could have more trouble along the way (bed-wetting, withholding bowel movement, constipation).
You’ll want to make potty training a positive experience by reinforcing the child’s current abilities. Not uncomfortable, in which case your child may engage in escape/avoidance behaviors.
Next month we will discuss preparations to take for potty training. Please join us on our Facebook Page with your questions or stories: https://www.facebook.com/AisforAppleInc/
Ask A is for Apple: Children with ASD Using Digital Tools to Communicate
“Dear A is for Apple,
My child doesn’t respond well to flash cards, but loves playing with my phone. Is the phone a better tool for communication?”
The past 10 years have ushered in a whole new way for humans to communicate—using digital tools, like the iPad. Nowhere is this more impactful than for children (and adults) with ASD.
The explosion of smartphones, tablets & e-readers created an incredible new way for those with ASD & speech disorders to learn and communicate.
Apple gave us a wonderful example with this video: “Dillan’s Voice”
Through a single iPad, Dillan’s world has broadened. He can speak, and others listen.
That’s not the only benefit digital tools can give, either. They can also:
- Support the overall learning of children on the autism spectrum
- Help teach social skills
- Support an individual’s emotion regulation
- Help develop cognitive skills, improving memory, easing transitions
- Boost literacy and language skills
- Increase independence, creating self-management programs offering reinforcement
- Provide imitation, modeling, and corrective feedback
- Support a young adult’s transition into the workplace
- Make data collection and program evaluation more effective and efficient (between parent/clinician/teacher)
- Strengthen teachers’ training programs
- Enhance the use of evidence-based practices
As an industry, we’re still getting a handle on incorporating these tools into treatment plans. The good news is, we do have plenty of tools to work with!
These are examples of the types of tools now available:
- E-readers and tablets (iPad) with integrated multimedia (cameras, microphones, etc.)
- Apps for education, communication, behavior regulation, etc.
- Video modeling
- Language processing software
- Customized digital stories and book creator apps
- Element cue supports
- Emotional regulation and sensing technology
- Interactive learning software, to improve feedback and metacognition
- Visualization and mind mapping apps
- Text-to-speech and speech-to-text software
- And of course, the iPhone.
Some of our industry’s earlier, pre-digital tools (like visual schedules, flash cards, etc.) are now available in digital format. More arrive every day.
If your child is drawn to using technology, that’s great! We encourage you to try out several digital tools with your child, and find which ones they’re most likely to use.
If your child is socially anxious, here’s an idea to help calm them. Think about the self-checkouts at the grocery store. Or the Redbox kiosk. These have touchscreens, audio prompting, and simple visual interfaces…the same type of interaction you’d find in an iPad. Show these to your child if they’re anxious. It may help focus their attention.
Here are some additional resources, to help you learn more about digital tools available to your child:
Whether it’s for learning, to communicate with you, or simply to comfort them in unfamiliar situations, the right digital tool can make their lives so much better.
If you want to try out a digital tool or app in therapy sessions, please talk with your A is for Apple supervisor. We’re happy to show you all the tools at our disposal.
Does your child like to communicate using a phone or tablet? Please share your story on the A is for Apple Facebook page!
Do you have a question you’d like answered? Please email it to us at firstname.lastname@example.org for inclusion in a future newsletter.
Inside A is for Apple
The 2016 Autism Speaks Walkathon – Event Recap
Last month, the A is for Apple team participated in the Autism Speaks 2016 Walkathon.
History Park in San Jose was packed full of wonderful people! We had balloons and snacks for kids at our booth, and handed out lots of brochures. The whole team talked with parents, fellow vendors, and many curious visitors about autism awareness. Our friends from the San Andreas Regional Center even dropped by during their rounds.
Our team participated in the walk as well. We had plenty of company—it’s great to see so many come out and show their support with us.
A big thank you to everyone who came out! We raised close to $2,000 for autism research & awareness at this event. The whole team looks forward to next year’s walkathon!