baby looking up with fingers in mouth

March 26, 2021
by Editorial Team
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Autism and Attention: Making Connections

You want to learn how you can help you child. It helps to know about the basics of ASD. You can connect this basic information to the small, daily actions you can take to help your child learn and grow.

There is now wide agreement that ASD is a neurodevelopmental disorder. It affects 1 in 54 kids. This understanding replaces past views of ASD as a rare disorder mainly of behavior or speech. “Neurodevelopmental” means ASD is based on the brain’s neurology, or brain wiring. Of course, brain wiring influences learning, functioning, and behavior. Neurology changes dramatically as kids develop, which makes ASD seem like a moving target as a child grows.

Observe with Curiosity

In considering a child’s behavior, then, parents and teachers can keep in mind:

  1. A child’s behavior is shaped by their brain wiring
  2. A child’s behavior can tell us something about him or her

The key is to be curious about what the child is communicating through his actions. Even though the child may not be purposefully communicating, his behavior provides insights. This shift in your own understanding and interpretation is very important. It shapes how you engage with a child.

Key Brain Wiring Differences

Children with ASD have challenges in processing social and emotional information. Most typically developing newborns are drawn to look at faces, which give them information about what people think and like and what is pleasant or unpleasant. Many babies who have ASD do not seem to pay attention to their mother or father looking at them. They may not attend to eyes or enjoy emotional displays like a smile or wide-eyed surprise. The baby may not be interpreting or “reading” facial expressions. It could also be that he is not emotionally or physically calm enough to pay attention to these emotional displays. Sometimes children with ASD focus more on parents’ mouths than their expressive eyes. Not attending to other’s faces is the most consistent discriminating factor for a diagnosis of ASD at one year.

Does this really have an impact on our children’s learning? Yes! Because they attend less to faces, children with autism do not easily follow the gaze of another person to join into what is happening around them. They tend to miss the meaning in facial expressions. Altogether, they miss opportunities to share experiences with others via eye contact (this is called shared attention). When we share attention with another person, we are communicating with them. We look at what interests them. We smile at what pleases them. We are afraid of whatever they show scares them. This happens long before babies have actually the words for conversation. With little or no information from the face, the autistic child’s environment can feel more confusing, surprising, and distressing than it does for a neurotypical child.

Drawing Attention

Research studies on face recognition and ASD give us clues on how to engage our children. We need to draw their attention to our faces and our eyes. We can encourage them to “check in with me!” We can exaggerate our expressions to pique interest.  We may hold favorite toys or snacks near our faces to draw attention there. We can praise them for meeting our eyes. After all, we look at what we are thinking about, so the more our children are attending to others’ faces, the more likely they are to make social connections.

We can do much to help our children grow and learn. Through practice noticing faces and getting even partial information from facial expressions, children can grow their brain wiring for attending to this information. This provides a better understanding of social contexts. However, it’s also important to acknowledge that this joint attention can be overwhelming or intense for a child who isn’t wired for it, so a sprinkling of opportunities for practice throughout the day may help keep the child feeling emotionally regulated and calm.

Authors: Mary Powell, CEA Board President and Beth Dierker, CEA Executive Director.

For more information about autism, read Mary’s earlier post, From Concern to Clarity: Insights for parents’ first steps on an autism journey

Oxygen Mask Podcast Logo

March 22, 2021
by Beth
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Oxygen Mask Episode 17: Dads of Kids with Special Needs

In this episode, we hear from two men who’ve lead a support group for dads of kids with special needs for over 15 years. Impacted by one father’s isolation and struggle as he processed his child’s diagnosis, Don Nikkola, MSW, knew this father was not  alone. He partnered with Steve Roeklein, LCSW, to address a big gap in peer support for men. Steven later summarized their approach as follows: validate [what men share], normalize [men’s experience/”you’re not alone”], empower [men to engage and grow]. Hear how this group of fathers helps each other navigate their unique fatherhood journeys.

Show Notes: 

Learn more about Twin Cities Dads (Helping fathers help their special kids) at https://tcdads.org/

Note: Don and Steve expressed appreciation for Arc Minnesota’s past sponsorship of their group.

Kluth reading "Pedro's Whale"

January 31, 2021
by Shannon
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“Just Give Him the Whale!” Workshop

Educators, parents, and professionals were inspired and energized by our Jan. 25th workshop with Paula Kluth. Using her book – “Just Give Him the Whale!” – as a jumping-off point, we discussed how fascinations are a powerful tool for engaging learners on the autism spectrum. Of particular focus was using these fascinations to build bridges instead of dangling carrots to lead into learning.

Often we (parents and educators) dangle a student’s special interest as a reward for compliance. For example, “after finishing your math homework, you can do this map puzzle.” Instead, we can use maps as a bridge to learning math with a few modifications and some creativity. Once we shift our mindset, a whole world of possibilities for engaged learning opens up. And Kluth guided us into shifting that mindset and how some of those possibilities manifest in real life. She also shared the deep impact it has on our kids across learning domains (see Impacts of Special Interest Areas slide below). Kluth encouraged using a strengths-based curriculum map (see “Examples…” slide below) for integrating special interests into learning.

Fascinations are also powerful tools for calming and establishing, maintaining, or deepening relationships. This is even more essential as learning continues in the virtual classroom. Kluth shared ways that deep interests become vehicles for all students to connect with their teachers and their classmates. One class encourages students to change their screen name to their favorite cellphone, which is a special interest of one child with autism. This engaged the student in their virtual classroom, fostered connections, and has inspired the class to highlight every student’s special interest in subsequent days. This snowballing effect increased social-emotional supports for all students.

And finally, we learned about purposeful fidgets. These are tangible items that students have at home to keep them anchored and engaged in the online classroom. Using fascinations makes these powerful focus tools while also guiding the student toward completion of an academic or IEP goal. Examples include 1) letting a student assemble a puzzle of the solar system while listening to a group meeting or lecture. Purchasing blank puzzles and drawing the content on (i.e. parts of a cell) is a cheap and easy approach 2) giving students of all ages coloring sheets related to the academic goals 3) giving a student fascinated with calendars a three-dimensional calendar to assemble or fidget with during a lesson.

Learn more about how fascinations and following them leads to social and academic success for students on the autism spectrum in Kluth’s book, “Just Give Him the Whale!” You can purchase one of our remaining copies here.

This workshop was made possible by a Disability Services Innovation Grant through the MN Department of Human Services.

January 4, 2021
by Beth
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Oxygen Mask Episode 16: Guest Delia Samuel, Part 2

We dive deep with Delia Samuel in this second part of our conversation. She reflects on discrimination, isolation and her commitment to build understanding of autism. Delia shares more about what has sustained her in extraordinarily difficult times. Beth, Tera, and Delia recognize how we parents grow to become the best-suited people to parent our autistic children.

Show Notes:

“The But God Project” features Delia’s faith story.

Delia is a co-founder and board member with the Multicultural Autism Action Network (MAAN). On Facebook: https://www.facebook.com/groups/MAANMN

Article about Dr. Samuel’s work in St. Lucia

December 31, 2020
by Beth
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Oxygen Mask Episode 15: Guest Delia Samuel, Part 1

Listen in to our conversation with Dr. Delia Samuel for encouragement and rich perspective. By openly sharing about her own experience parenting two autistic boys, Delia’s found that she can help parents face stigma and feel seen and supported.

Show Notes:

Delia is a co-founder and board member with the Multicultural Autism Action Network (MAAN). On Facebook: https://www.facebook.com/groups/MAANMN

Article about Dr. Samuel’s work in St. Lucia

November 23, 2020
by Editorial Team
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Ale for Autism, 2020

Thank you for making Ale for Autism 2020 a success! October’s COVID-adapted experiment in giving raised nearly $2,000. We couldn’t have done it without our sponsoring breweries – Pryes Brewing and Lake Monster Brewing! These funds will help CEA grow our parent wellness and support opportunities as they go virtual, just like this year’s Ale for Autism.

We missed sharing space with you, but definitely felt the shared love and care that makes up our community.

November 23, 2020
by Editorial Team
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From Concern to Clarity: Insights for parents’ first steps on an autism journey

In a Holding Pattern with Hard Questions?

Many parents just like you have been told their child has autism spectrum disorder. Sometimes the words are not exactly “ASD.” They might be “global delay” or maybe “pervasive developmental disorder.” Different terms have been used over the years, and that makes this confusing. In your child’s early years, you may have heard descriptions like communication or social delays, low frustration tolerance, sensory processing issues, and inflexibility. Some of these may stand on their own, but when linked together, these descriptions can point to ASD. Parents can spend a lot of energy asking more questions, exploring various explanations, or diving into one single dimension of their child’s challenges, feeling unable to take in the whole picture. This flurry of worry can be exhausting and rarely gets you closer to meaningful learning. We hope this post provides some clarity for parents who may be in a holding pattern of concern and uncertainty.

What is ASD? 

Regardless of the terms used, we know that most parents have very little previous knowledge of autism. It is a complex and puzzling disorder that has been challenging to educators, doctors, and researchers. In the U.S. especially, autism has been stigmatized as a mysterious, scary “epidemic.” For decades, resources have been poured into finding out what causes autism, often at the expense of efforts to support people with autism to live a good life. We now know ASD is a neurodevelopmental disorder that is much more common than previously thought. Recent prevalence estimates among children are as high as 1 in 54. ASD occurs on a continuum from very mild to severe challenges. Science tells us that ASD starts in the developing brain before birth. There is nothing that parents did during pregnancy or in the child’s early life that caused autism. Since there is considerable variability among children with autism, it is hard for us to compare our child to other children with the same diagnosis. 

Why the Label?  

Many parents ask, “does my child really need a label?”  No, but a professional who has given your child a diagnosis or service identification sees developmental signs that suggest your child will benefit from educational or therapeutic services. Essentially, your child’s developmental path looks different than the path that his same-aged peers are walking. These differences lead to struggles and frustration for your child as she spends time with other children and adults. A label constitutes an access pass to supports and services that can help your child get his needs met, communicate, be better understood by others, and, in time, better understand and advocate for himself.  

After diagnosis, many parents tell us that they have had concerns about their child’s development for several months. They’d noticed that they were persistently struggling more than other parents with their child’s eating, sleeping and/or ability to transition from one activity to another. They noticed things their child did that were different than other children their age. Yet, some parents say they never noticed anything different about their child and really feel the diagnosis might be wrong.  There are lots of families that say several of their family members have traits that are noted as signs of autism spectrum disorder. They are just fine with that. They accept their child as he is.  Yet, a diagnosis comes with avenues to learn and to gain resources to help your child in community settings. It doesn’t have to be an either/or scenario (EITHER I accept my child as he is OR I focus in on his challenges). You can BOTH accept your child as his is AND learn more about him, getting the tools and guidance you all need to make life smoother now and in the future. 

How Do We Know?

There is no specific test for autism spectrum disorder. No specific blood test, no specific action, no defining physical trait. Determination of ASD is based on the child’s behavioral characteristics and developmental pattern. It takes time for patterns to emerge. You have to watch what the child does or does not do. This is tricky because children respond differently in various situations. Some parents watch their child in an evaluation and are upset that the evaluator does not get their child to show all he can do. The evaluator is assessing the child’s response outside of established routines without a parent who knows how to engage the child. Remember the diagnosis also takes into account information you provide regarding developmental history. You are an important source of information. 

Diagnosis or evaluation can be done by an individual or a team. The benefit of a team is that several different areas of expertise are brought into the evaluation. A diagnostic assessment can be done as early as 18 months, and there are a number of reliable diagnostic tools. Many children are not diagnosed until 4 or 5. No matter your child’s age, do not be concerned that it is too late for intervention and support. The word diagnosis applies when a determination of autism comes from a medical doctor like a pediatrician or a developmental specialist, psychologist or a neuropsychologist. Evaluation is the term used in education and where a team approach is most common (including a teacher, speech clinician, and occupational therapist). We have also heard about some parents who used Google to recognize their child’s autism and have their observations confirmed by professionals later. You also can get a second opinion. You might get a slightly different decision because of timing and clinical experience, but this does not mean that your child’s autism is more complex. It illustrates that ASD is complex and clinicians make a diagnosis based on what they observe and what the parent shares. More labels likely reflect more or different consultation and not necessarily that the child’s autism has changed. 

All diagnosis or evaluation criteria agree on the accepted definition of ASD in the Diagnostic and Statistical Manual of Mental Disorders of the American Psychiatric Association, Fifth Edition. For now, letfocus on the two characteristics defining an autism spectrum disorder. 

  1. Problems in social communication and social interaction. Examples you might see in a young child are difficulty in back and forth conversation, little interest in sharing interests or emotionslimited eye contact, little interest in imaginative play or other children.
  2. Restricted, repetitive patterns of behavior, interest, or activities in at least two instances like repetitive speech or motor movements, insistence on sameness, highly restricted interests, or hyper or hypo reactivity to sensory input.    

An easy way to see this in babies and toddlers is to look at the First Words Project from Florida State University.  Here you can screen your child, sign up for the Baby Navigator and see what autism looks like in toddlers. Some of the signs of autism in toddlers are “yes” to these questions: 

  1. Is it hard to get your baby to look at you? 
  2. Does your baby rarely respond to his/her name?
  3. Does your baby rarely share interest with you like pointing or showing?
  4. Does your baby rarely imitate actions like hugging a teddy bear or pretending to drink from a cup? 
  5. Does your baby get upset over unexpected changes? 
  6. Is your baby very sensitive to sounds, sights, and textures? 
  7. Does your baby have difficulty shifting attention? 

Process the Big Feelings

Many parents have shared their feelings on diagnosis. From fear and anger, to sadness, confusion, relief, or curiosity. It’s hard not to be daunted by the future when someone determines our child is not developing typically. Yet there is also relief to get some answers and pride at following up on your concerns. There may even be joy or surprise in seeing oneself or other relatives through the lens of autism. Write down or talk privately about all those feelings with a trusted person to regain your parental footing. This will take time and patience. Your child is the same child both before and after ASD is identified. You are the same parent who knows and loves him best. You can help support your child has he grows, particularly while his young brain is growing more and more neurons every day. You can enroll your child in your local school program or in therapy in our community. Yet the biggest impact you can have on your child’s development is what you do every day in your home. Your loving, responsive guidance cannot be overestimated. The ways you engage your child, nurture communication, teach and discipline, and have fun will shape your child’s life. We at CEA are here to offer you information and support through this journey. 

Author: Mary Powell, CEA Board President

cyberbullying

October 2, 2020
by Shannon
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Bullying Prevention Month

Bullying doesn’t confine itself to one month of the year, but having a month where we as a community look at it, and what we can do to combat it, is critical. At CEA we mark this month by sharing information and resources with our families because this is an issue that we deal with more often.

Now that our social and emotional lives have moved largely online, bullying looks different. But its impact remains the same. Some research shows that cyberbullying has even deeper impacts than bullying occurring offline. This type of bullying is pervasive, hard to track and invades our homes and other safe spaces for kids.

Many of our tools and resources do not fully address this new online life, but schools are a great resource for what to do about cyberbullying. And Pacer Center also has some great online resources.

Your contributions help Communities Engaging Autism as we adapt to these trying times – innovating with our programming and content to reach parents, families and educators where they are.