Do you ever wonder what goes on in your child’s mind? Or, if you are parenting a teenager, maybe you don’t want to know...I think every parent wonders what their child is thinking at times, especially when they are infants or toddlers. However, for the Autism parent, this feeling happens much more often and for a longer time span...maybe throughout their childhood or even into adulthood.
I can remember working with a family once and the mother told us a devastating story at her son’s IEP (Individual Education Program) meeting. She shared that her greatest concern for her son was for him to be able to tell her about his feelings. Her son was an eight-year-old at the time who was significantly impacted by Autism and minimally-speaking. One night, when helping him with his bath, this mom noticed that her son had a terrible scratch on his leg that looked as though it had happened that day. He winced as she tended to his injury. This mom realized that her son had been injured somehow that day and was unable to tell her that he was sad, hurt, or in pain. She cried as she told us this story at the IEP meeting, and inside I cried for her, too. This was many years ago, before my own daughter “Amazing Grace” was diagnosed with Autism Spectrum Disorder.
Language and communication are one of the hallmark areas of challenge for individuals with Autism. This can manifest differently from one person to another. It can be as significant as being unable to tell someone that you are hurt. However, for individuals less impacted by Autism, many still struggle to effectively discuss their feelings and the feelings of others. Though their academic vocabulary may be strong, beyond their peers, many individuals with Autism have a very immature emotional vocabulary.
I recently had a moment with my daughter that typifies this concept. For several years, Grace has expressed her distaste for me when I coo and “talk” to babies that we see in stores, at parks, etc. She has mentioned to me that I should not talk to babies as that is “not my business”. However, recently when this situation occurred, Grace was able to use words to explain to me her truefeelings for the first time. She told me that when I engage with babies, she feels “sad and unloved” and she further asked “Mom, you do still love me…right?” My heart sank to think that Grace felt this way, while also feeling relief because I finally knew what had been bothering her all this time.
What can we do to help?
If your child with Autism struggles to share their ideas, thoughts, wants, or needs, here are a few ideas to help…
One of the greatest challenges in parenting a child with Autism Spectrum Disorders is the struggle with communication. However, with persistence, patience, and love, it is possible to effectively support our children while helping them find their voice.
Have you had "the talk" with your child? I am referring to a discussion about your child having Autism 😉. Many Autism parents like myself begin to contemplate having "the talk" as our children enter the mid years of elementary school. Others wait until adolescence or young adulthood. Let's briefly discuss the pros and cons...
Disclosing to your child can be empowering for them. It can help them make sense of their known strengths and challenges. Disclosure can also support your parent/child relationship. Many individuals diagnosed with Autism as adults report feeling resentful towards their parents initially because their parents did not address the issue early on.
Disclosure could initially evoke feelings of fear, anger or sadness. Also, older children could begin to use the diagnosis as an excuse for certain behaviors.
As you already know, each child with Autism is an awesome individual, to say the least. That being said, what works for one child or family may not work for yours. As you contemplate talking to your child about Autism, be encouraged! Trust your gut and make the decisions that work best for your child/family. Remember that clinicians and fellow Autism parents like myself are here to assist. Feel free to reach out for more information...
References: Indiana Resource Center for Autism (www.iidc.indiana.edu)
Are meltdowns common at your house? It has definitely gotten better for us now that my daughter is seven. But, when she was younger, we experienced our fair share of meltdowns. These extreme reactions to small problems are typical for children on the Autism spectrum. Why? Likely due to challenges with emotional/self-regulation.
Emotional regulation is the ability to monitor and control our behavior or emotions and adjust them based on the situation. For example, when we are well regulated we can cheer ourselves up when we’re sad and calm ourselves down when we’re upset.
So, why do our kiddos with Autism struggle so much in this area?
One reason is that individuals with Autism typically have challenges with executive functioning skills. These skills are controlled by the frontal lobe of the brain and help us to use past information to make action in the present. Executive function skills include: shifting attention, flexible thinking, inhibiting emotions and organizing/planning. Individuals with Autism also tend to have poor working memory skills and sensory sensitivities. The combination of these challenges makes it very hard to navigate the requirements of daily life and stay emotionally regulated.
What can parents do to help?
1. Observe your child: Simple, but not really. Without intervening, watch how they handle the daily stressors of life. What behaviors are they currently using to cope? This will be helpful to know as you assist them in developing a plan for using more productive and "expected" behaviors.
2. Size of the Problem: Discuss the daily problems that your child typically experiences as a "range", like from 1-10. For example, a broken pencil is a 1. We have control over this situation by simply getting a new pencil. But a broken leg may be an 8 or 9. We have little control over this situation once it has happened. We must depend on others and time to help. Typically, our children with Autism go from 0-10 when problems occur without understanding the gray area in between.
Also, we can discuss the expected reactions for different size problems. For example, if you break your pencil it is expected that you will just choose a new one. Crying, screaming or yelling would be unexpected in this situation. Michelle Garcia Winner has developed awesome materials to assist with teaching these concepts, found at socialthinking.com.
3. Zones of Regulation (ZOR): ZOR is a great program developed by Leah Kuypers, an Occupational Therapist (zonesofregulation.com). ZOR is a visual framework that puts words to our feelings with appropriate strategies for getting into a “good space”.
4. Social Narratives: Social narratives are short stories with and/or without pictures that honor the feelings and thoughts of the child while explicitly teaching the expected behaviors for specific situations. These stories can be developed by caregivers and clinicians with the participation of the child if possible. Carol Gray’s stories are a great example of social narratives (carolgraysocialstories.com).
Over the years, we have created numerous social narratives for my daughter to help guide her through situations such as attending birthday parties and fire drills at school. Now, we keep the stories in a binder for her to review at her leisure. It is important to note, however, that social narratives should be created, discussed and reviewed prior to the target situation occurring. As for most of us, "in the moment" of the situation it may be too challenging to review strategies and successfully attain emotional regulation.
Meltdowns for children with Autism are common. However, there are many strategies to help support them in building emotional regulation along their Autism journey.
References: Researchautism.net; Psychologytoday.com; Education.com; www.hope-therapies.com
As a parent of a child with Autism, I know that we are always searching for a support, resource or strategy to help our children become the best they can be. Have you. like me, considered making dietary changes to help your child? Let's dive into the research and learn more about this topic...
First of all, we must all remember that each individual with Autism is truly unique. So, what works for someone else's child may or may not work for your child. Most experts recommend a strict trial of at least three months in order to determine if a special diet will help your child. If there are no improvements after three months, you can feel secure that you have made a good effort without a major financial investment.
Popular diets for individuals with Autism include:
The Gluten-free diet has been studied the most for individuals with Autism. However, more research is needed to statistically confirm the benefits. It is believed that the breakdown by-products of gluten and casein (peptides) may interact with opiod receptors in the brain, either causing or significantly increasing autistic behaviors. Studies have also shown that there are increased food antibodies (IgG and anticasein antibodies) in a subset of children with Autism who have co-existing gastrointestinal issues. Although this suggests a "gut-brain" interaction, researchers can't yet confirm the direction of this interaction.
Surprisingly, gluten can currently be found in a myriad of products in the U.S. Examples of food products include: bread, cereal, pasta, cake and donuts. But, did you know that gluten can be found in many non-food products as well? Examples include: lipsticks, toothpaste, stickers, detergents and sunscreen. This is definitely something to consider when making the choice to trial a gluten-free diet.
The Feingold Program is also a popular diet for children with a variety of learning and behavioral differences, including Autism and ADHD. In 1965, Dr. Ben Feingold began his studies of the link between certain foods and additives and their effect on some individuals’ behavior and ability to learn. The Feingold Program is a form of elimination diet where foods containing certain harmful additives are removed and replaced with similar foods that are free of those additives. When starting the Program, certain foods and non-food items containing an aspirin-like chemical called salicylate are also eliminated, and later tested for tolerance.
The best recommendation again is to know your child, trial changes consistently for a short time and monitor for any benefits or side effects. It is also best to work with an experienced nutritionist, dietitian, or clinician if possible with experience in Autism.
The call…”Mrs. Sanford, there has been an incident at school.” My heart sinks as I hear that my six-year old child with High-Functioning Autism has been the target of bullying by her peers. We immediately convene multiple meetings to address the issue and to ensure that this type of behavior does not happen again.
In recent years, incidents of bullying in various degrees have filled our news and social media venues. In an article from 2000 (Counseling and Human Development), author Barry K. Weinhold stated that "bullying is the most common type of violence in contemporary US society".
Research reveals that children with Autism Spectrum Disorder (ASD) unfortunately experience bullying even more than their neurotypical peers. For example, one study found that a total of 63% of 1,167 children with ASD had been bullied at some point in their lives (iancommunity.org). Another study found that those impacted by High-functioning Autism and/or Asperger's Syndrome were bullied more than children more significantly impacted by Autism.
The Bullying-Autism Connection
So, why is there a connection between Autism and bullying?
1. First, those who bully typically have been bullied themselves in some form. So, bullying others becomes a coping strategy for managing their own unresolved pain.
2. Because of theory of mind or “mind reading” challenges and social skill difficulties, our children with ASD become vulnerable targets for bullying. For example, they typically struggle to infer the intentions of others or have difficulty reading body language and other nonverbal cues. Those who bully find it easy to take advantage of these weaknesses.
How Can We Help?
There are several strategies to help decrease the incidence of bullying for our children with Autism.
The reality of bullying is far too familiar to families impacted by Autism Spectrum Disorder. As a clinician and Autism parent, I have experience from two perspectives. I believe that we can and we must do more to address bullying at various levels. Let's do what we can to see change for all, especially for our children with ASD 💙
This month our focus is on improving various relationships impacted by Autism. One example is friendships. Starting and keeping friendships for our kids with Autism can be tough. Wondering about strategies to help?
1. Embrace Solitude: If your child falls anywhere on the Autism spectrum, then you are likely aware that they tend to be happiest when they are by themselves. As neuro-typicals, this may be hard for us to accept. However, it is vital to embrace this truth early on. It will decrease frustration and anxiety as we parent our child with their unique needs by honoring their need to be alone. This does not mean that we do not actively assist them in developing healthy relationships with others. However, this should relieve just a little bit of the pressure.
2. Structured Play Groups: These are small play groups supported by trained adults. The groups include children with and without Autism. All kids have the chance to practice good friendship skills (ex: sharing, turn-taking, etc.) in a natural environment.
One example of this is Circle of Friends, a nationwide "school inclusion program that builds genuine friendships between students with special needs and their general education peers". I had the pleasure of starting a Circle of Friends chapter at a local high school many years ago and have done the same at a local middle school. The benefits seen by both children with and without special needs are priceless. You may consider talking to your child's school or special education team about starting a chapter at your school.
3. Video Modeling: As most of our children have a high interest in visuals, using videos to model and teach target behaviors (ex: greetings, playing a game, etc.) is an awesome strategy. Ideally, you should catch the moment and video your child when they are using the target behavior. Watching themselves in the video definitely helps to increase engagement. However, YouTube is also a great source for these videos that model positive friendship and social skills
4. Attend Local Events: Is your child with Autism really into Thomas the Train, dinosaurs, etc? Find local. small events at your neighborhood library, park or toy store where their passion is the theme. Your child will be able to engage with their peers and they will likely shine as the expert on the topic. This setting may also increase your child's motivation to engage with their peers since the topic is highly motivating. Another bonus: As a parent you may meet other like-minded parents and develop friendships of your own. Some San Diego resources include the San Diego Children's Museum and the Autism Tree Project Foundation.
Friendships for our children with Autism may take effort, however learning and practicing key skills early on in a variety of environments may reap a lifetime of benefits.
References: The Complete Guide to Asperger's Syndrome (Tony Attwood), AFIRM Modules
Identifying the Signs of Autism and
What do actors Dan Aykroyd and Daryl Hannah have in common? Both were identified with a "mild form of Autism" as young children. Both successful, but considered quirky and struggled socially. So, what is the difference in just being quirky and an actual Autism diagnosis?
Recently I offered a workshop for parents and community members titled "Just Quirky or Autism?" The purpose was to raise awareness and to help in identifying the signs of Autism Spectrum Disorder. I believe that this is especially challenging yet needed for individuals with Asperger's Syndrome, now classified as Autism Spectrum Disorder-Level 1 (DSM-5, 2013) also known as "High-Functioning Autism". So many of these children and adults are misdiagnosed and misunderstood, impacting their academics, social lives and careers.
So, where do we begin? First, let’s consider the term “quirky”. Merriam-Webster defines quirky as "different from the ordinary in a way that causes curiosity or suspicion". Does this describe someone you know? Before deciding, let’s look closer at High-Functioning Autism and discuss the characteristics. For consistency, we will use the term Asperger's Syndrome for the rest of this article since it is a more familiar term. Let us discuss just three factors to consider in its identification:
1. Immaturity in managing emotions
Individuals with Asperger’s Syndrome have difficulty regulating their emotions and matching them appropriately to a situation. For example, their emotional response to a small situation may be very intense, such as tantruming when something falls on the floor or breaks. In girls, this may also present as separation anxiety when leaving a parent. Research reveals that those with Asperger’s Syndrome tend to be quite "black or white" emotionally or “all or nothing”.
2. Exceptional abilities in a preferred area
There may be a high interest in one area, such as trains, swimming or planets for those with Asperger’s Syndrome. This interest may monopolize their thoughts and conversation. However, although cognitively intact, these individuals may struggle with attention and learning new concepts. As adults, they may be encouraged to pursue their passion in some degree as a hobby or career.
3. Sensory challenges
Specific sounds, smells and tastes may be offensive to someone with Asperger's Syndrome. For example, they might avoid wearing certain clothes or eating certain foods because of the textures.
Another example is covering their ears in response to or anticipation of an unpleasant sound. This sound may not be noticeable or bothersome to others, which may make their behavior seem odd. We noticed this early on in our daughter. One day at age 18 months, we noticed that she was quite fussy while riding in the backseat of the car. After several trials, we realized that she was quite irritated by the clicking sound of the fingernail clippers that I was using in the front seat. Another early example of the differences in our daughter "Amazing Grace".
Research shows that most individuals with Asperger's Syndrome are identified during the early school years, as the social demands of life increase. However, many adults are now discovering the diagnosis for themselves. This is likely due to the increased visibility of Autism in the media, internet searches and/or suggestions from family and friends.
Are you considering a diagnosis of Asperger's Syndrome for your child? Are you an adult considering this diagnosis for yourself? Here are a few resources:
1. Autism Speaks: Asperger's Syndrome
2. Autism Speaks: Adults
References: Diagnostic and Statistical Manual of Mental Disorders (DSM-5, 2013); The Complete Guide to Asperger's Syndrome (T. Attwood, 2015); autismspeaks.org; merriam-webster.com
Wondering what “elopement” and Autism have in common? Do individuals with Autism often secretly run away to get married? Alas, that is not the case.
The original definition of elope is to run away and not return to the place of origin. However, as defined by the National Institute of Elopement Prevention and Resolution (NIEPR), elopement refers to an individual with cognitive challenges or special needs who wanders, runs away from or otherwise leaves a caregiving facility or environment.
Most parents of Autism are all too familiar with elopement. In my observation, no matter where on the spectrum, children with Autism tend to stray from their caregivers; some only occasionally and others quite often. Case in point: our daughter “Amazing Grace”. She was diagnosed with High Functioning Autism at age 3 ½. However, we noticed this behavior in her early on, around age two. Whenever we went to the grocery store, she would somehow find her way to the produce section and to the broccoli. She would talk about the broccoli and touch it, becoming as excited as most children are about ice cream. At age 6 ½ and despite strategies and reminders, Grace continues to stray from the safety of her family from time to time. She usually wanders to get to a preferred item or activity when she has been told to wait, such as waiting to go to the produce section to see this week’s selection of broccoli.
A study in 2012 (conducted by Autism Speaks and the Interactive Autism Network) found that nearly half of children with Autism Spectrum Disorder (ASD) at some point attempt to wander or bolt from a safe place. Using parent surveys, the researchers studied over 1,100 children with ASD ages 4-11 years. They found that these children demonstrated much higher instances of wandering than their neuro-typical siblings.
So, what makes children with Autism wander from safety? Given the study in 2012, parenting style was not the culprit. Instead, the more a child was impacted by Autism the more instances of wandering were reported by the parent. From the parents surveyed, most remarked that their child wanders because they just like exploring and running. Others mentioned heading to a favorite place or escaping too much sensory stimulation as reasons.
Help for Families
As imagined, elopement causes stress and concern for parents and caregivers of those with Autism. One consideration in reducing elopement is to look at the function of the behavior. For example, if the child is wandering to escape an overly stimulating situation, they may benefit from training in self-advocacy. The child could be encouraged to use a specific gesture, word, picture card, etc. to request a break when experiencing sensory overload.
Other options to assist with elopement include:
Increased community awareness and education can help tremendously in the case of elopement and individuals with Autism. Let’s do what we can to keep our kids safe!
Could an adult actually be diagnosed with Autism? With the increase in awareness, most individuals now are diagnosed with Autism Spectrum Disorder (ASD) at younger ages. However, that was not always the case. As a result, more and more adults are self-identifying behaviors and seeking information regarding an Autism diagnosis.
Behaviors typically related to Autism include: sensitivity to sensory input (touch, taste, smells), difficulty taking others’ perspective, having restricted interests, difficulty with changes to routine and challenges with conversational turn taking. Since some behaviors appear to overlap with other disorders, such as Obsessive Compulsive Disorder (OCD), some adults may have gone misdiagnosed or undiagnosed with Autism for decades. Another factor in late diagnosis is that girls are significantly less likely to be identified with ASD as compared to boys, instead being seen as “shy” or “introverted”.
There are also many strengths related to Autism, including: honesty, attention to detail, high skill level in specific areas and less impacted by peer pressure. These strengths, along with great long-term memory and visual thinking skills, make adults with Autism excellent candidates for jobs in computer programming, photography, drafting, animal care, etc.
Since there are no medical tests to diagnose Autism Spectrum Disorder, evaluations are typically conducted by psychologists or psychiatrists and consist of gathering systematic observations of the individual in a variety of settings. Input is also obtained from significant others, caregivers, friends, parents, etc. via questionnaires or checklists. However, the challenge is that most behavioral checklists used in assessment were designed for assessing children, not adults. Also, the parents of adults are often deceased or unable to provide quality information about early childhood behaviors– which is key to a comprehensive evaluation.
Fortunately, evaluation tools are slowly being created to address the need for assessing Autism in adults. For example, in 2015 the Adult Repetitive Behavior Questionnaire (RBQ-2A) was developed to measure the extent to which adults are affected by repetitive and restricted behaviors (a core symptom of Autism). Also, some experienced child psychiatrists, pediatric neurologists, etc. may be open to working with adults suspecting Autism or can at least be a good resource for information.
To learn more about Autism in adults, download the free tool kit provided by the Autism Speaks organization: https://www.autismspeaks.org/adult-tool-kit. Or, feel free to contact us for your free 30-minute consultation.
References: Dr. David Beversdorf, www.autismspeaks.org, July 2014. Dr. Temple Grandin, www.iidc.indiana.edu, November 1999. K. Yandell, www.spectrumnews.org, September 2015.
This month’s topic is perspective taking, more formally described as Theory of Mind (TOM). TOM is a core area of struggle for children and adults diagnosed with Autism Spectrum Disorder. However, research shows that those with Asperger's syndrome may be impacted with less intensity.
What is Theory of Mind (TOM)?
A definition of Theory of Mind is, “the ability to intuitively track what others know, think, and feel during personal interactions”. We use the information that we gather during these interactions to understand/monitor our own responses, make sense of other people’s behavior, and predict what people may do or say next. The foundations of Theory of Mind skills develop gradually from infancy and typically solidify by 6-7 years of age.
Challenges with TOM
Theory of Mind deficits may cause social difficulties: being sensitive to other
people’s feelings, reading the listener’s interest level in our conversation, anticipating
what others think of one’s own social behaviors, and understanding “unwritten” social
rules. These deficits may also cause academic challenges related to comprehension of
literature, understanding socially based themes in text, or interpreting directions given
by the teacher.
How Parents Can Help
1. Stress “thinking about others” at home. Discuss how our actions yield positive and/or negative consequences.
2. As situations occur, share your "thinking" with your child (ex: When you cleaned your space at the dinner table tonight, I felt proud of you!)
3. Help your child to deconstruct social rules by using books and social stories (ex: Social Rules for Kids by Susan Diamond and Social Stories by Carol Gray).
Jill Kuzma SLP Social & Emotional Skill Sharing Site (2008), www.jillkuzma.wordpress.com; The Applied Psychologist-Second Edition (1999), Chapter 11, Dr. Simon Baron-Cohen, Open University Press, Buckingham/Philadelphia; Understanding Core Social Thinking Challenges: The ILAUGH Model, Michelle G. Winner, www.socialthinking.com.
Crystal Sanford, M.Ed., M.A. CCC-SLP is an Educational Consultant, Autism IEP Advocate and Speech Pathologist. Her passion is advocating STRONG alongside fellow Autism moms, helping them to persistently pursue what's best for their children at school. In her free time, she enjoys gardening and spending time with her husband and two children in San Diego, CA.