Mo Buti, an advocate and instructional expert for people with autism joins us to take a deep dive into the IEP process. She shares details about all the people that make up the team and how parents can best prepare and advocate for their child. As Mo shared, “It’s so important that communicate well and build relationships with your team. Even if you disagree, it makes the process so much more successful.”
For More Information:
https://www.aiepautism.com/
The following is based on a conversation Ronit Molko, Ph.D., BCBA-D and Dr. Evian Gordon, Chairman and CEO of Brain Resource.
The development of the brain is a fascinating and essential aspect of child development. The science behind the brain provides parents and practitioners valuable insight as to why early intervention is important for individuals with autism and other developmental disabilities.
At birth, a child’s brain is a work in progress. It develops as they experience the world through seeing, hearing, tasting, touching, and smelling the environment. The natural, simple, loving encounters with adults that occur throughout the day, such as a caregiver singing, smiling, talking, and rocking their baby, are essential to this process. All of these encounters with the outside world affect the child’s emotional development and shape how their brain becomes wired and how it will work.
The experiences of babies have long-lasting effects on their ability to learn and regulate their emotions. When there is an absence of appropriate teaching and learning opportunities in the baby’s environment, the brain’s development can be affected and there are more likely to be sustained negative effects. Conversely, if we can provide ample learning opportunities, we can facilitate brain development. Let’s understand how and why.
Learning is about connection. A baby is born with more than 85 billion neurons in its brain, the major nerve cell of the brain. Neurons transmit information between each other through chemical and electrical signals via synapses thereby forming neural networks, a series of interconnected neurons. This is what is meant by “the wiring of the brain” and “neurons that fire together, wire together”. Neurons and synapses grow exponentially in the first years of life, even before a baby can walk and talk. Between birth and about 3 years of age, the number of synapses in the brain increases from about 2,500 to 15,000 per neuron.
As an infant experiences something or learns something for the first time, a strong neural connection is made. If this experience is repeated, the connection is reactivated and becomes strengthened. If the experience is not repeated, connections are removed. In this way, the brain “prunes” what is not necessary and consolidates the connections that are necessary. During infancy and the first years of childhood, there is significant loss of neural pathways as the brain starts to prune away what it doesn’t believe it will need to function. By the time your child reaches adulthood, the number of synaptic connections is reduced by half. Therefore, the earlier in a child’s development that we create that first, correct learning experience, the stronger those behaviors and skills are secured in the brain.
Children with developmental delays often experience the wiring of neurons together in a manner that is “unhelpful”, causing them to struggle with communication, social skills and other activities. These “unhelpful” connections need to be changed, which adds to the challenge and takes time. Technically, learning cannot be undone in the brain, but amazingly, with stimulation, the brain has the ability to re-process new pathways and build circuits that are helpful and functional. The brain has a remarkable capacity for change and adaptation, but timing is crucial. The earlier we create the correct connections in a child’s brain, the stronger those behaviors and skills are secured in the brain.
Intervention is best during early childhood when there are 50 percent more connections between neurons than exist in the adult brain. When a child reaches adolescence, another period of pruning begins where the brain starts to cut back on these important brain connections, and neurons that have not been used much. For children with all types of learning difficulties and developmental disorders, this understanding of the brain’s plasticity is particularly relevant, because it emphasizes why the correct type and intensity of early intervention is so critical. If we correctly understand a child’s skill deficits and design a program that appropriately stimulates the neurons in the targeted weakened areas of the brain, we can exercise and strengthen those areas of the brain to develop language, social skills etc.
While there is much evidence to support that early intervention is the preferred course of action because it capitalizes on this rapid early brain development, this wisdom often leaves parents or caretakers of teenage children with ASD feeling discouraged and concerned. Many children don’t have the opportunity to start therapy when they’re younger, and many others aren’t diagnosed until they’re teenagers. It may be easier and faster for children to learn new skills when they are younger, however, neuroscience tells us that the brain is still capable of learning during adolescent years, and this time period should not be forsaken.
So how do you train your child’s brain? In order to change the brain’s wiring and make new neural connections, a new skill needs to be practiced many times. Dr. Gordon recommends starting with one, simple task and practicing it at least 10 times per day. Measure how long it takes for your child’s behavior to change. This will help you determine your child’s rate of learning.
An example of a simple task is teaching your child to follow a simple instruction using a preferred item such as asking him to eat his favorite food. You can then move onto a more complex activity such as requesting eye contact by saying “Look at me” and then something more complex such as “touch the car” when playing with a toy car, for example. There are many opportunities throughout the day during normal daily parenting activities (bathing, feeding, diapering, reading, etc.) during which you can support your child’s development and train their brain to respond to people and their environment.
One common question is, “What is possible with the brain after childhood?” For many years, science has told us that brain plasticity is at its peak during childhood. However, experts now believe that under the correct circumstances, practicing a new skill can change hundreds of millions, if not billions, of connections between nerve cells in the brain even into adulthood. It is never too late to start. The most important thing to remember is that learning is what changes the brain and learning takes practice. Every opportunity to teach your child is an opportunity to shape their brain and change their future.
For more information, visit Developmental Milestones from the Child Mind Institute http://www.childmind.org/en/developmental-milestones/
Learn more about the work and resources of Dr. Evian Gordon at
https://www.mybrainsolutions.com/index.html
Harvard’s “Serve & Return” concept of parent engagement
http://developingchild.harvard.edu/key_concepts/serve_and_return/
The September 26th was created to honor the lives of a family that was tragically lost in a home fire. By providing safety awareness and preparedness resources for families the mission of this initiative is to review their safety plans every year on September 26th and use their checklists to be prepared. Kelly also commented on the importance of caregivers to support safety preparedness and awareness. As she said, “If a child can’t get out of the house in the event of a fire, were the other goals addressed important?”
For More Information:
Visit their website: https://www.september26.org/
Download the Fire safety check-list
Download the Natural disaster checklist
Download the Wondering prevention checklist
Download American Red Cross Emergency apps here
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).
Kari Luther Rosbeck, President & CEO, TSC Alliance, and Steven L. Roberds, PhD, Chief Scientific Officer, TSC Alliance join us for a discussion about Tuberous Sclerosis Complex (TSCA) a rare genetic disorder. This is an incredibly educational conversation on how this disease is identified and treated. About 50% of those diagnosed with TSC, will also have a diagnosis of autism. Even if your child is not at risk for TSC, the thoughtful approach to treatment and resources can be valuable for all parents. As Kari shared, “When people are ready, they need to know; what are the right questions to ask, what about genetic testing, what about medication, and how does that whole system work?”
Learn more about TSC Alliance by visiting tscalliance.org
Interested in ABA therapy for your child? Contact us https://lrnbvr.com/contact
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com)
Parenting can be stressful, and research shows that parents of autistic children consistently score higher on stress indicators than other groups of parents. While stress can be good for us—in manageable doses, it can energize and motivate—prolonged bouts of stress can lead to health problems. In fact, parents of autistic children report that they experience more depression, anxiety, and stress-related health problems than other parents. Parental stress has also been associated with marital distress, less effective parenting, and dropping out of treatment.
Why is this? Although no causal relationships have been definitively shown to exist between parental stress and kids with autism, several factors likely play a role. Some families cite pressure to get treatment early on, amplified by stories of “recovery.” A lack of sleep, financial burdens magnified by the need to pay for treatments, a greater necessity for parental vigilance and advocacy, and the presence of challenging behavior can also contribute to more parental stress.
If parents of kids with autism do, as research indicates, experience higher stress, what, then, does the research say can help parents and caregivers cope? Here are three research-backed suggestions:
It stands to reason that effective treatment can mitigate some of the parental stress experienced by families with autistic children, particularly those whose children struggle with communication and challenging behavior. As numerous studies suggest, the effects of challenging behavior (aggression, defiance) on the family system are a major factor in parenting stress.
What, then, triggers or leads to challenging behavior? Often, challenging behavior is precipitated by communication difficulties or unexpressed/untreated pain—and, as you likely know, autistic children have more health problems than typical children. Intervention that supports your child’s communication, assists them in accessing medical services, and arms you with behavior management tools can lower distress in both child and parents. Likewise, reducing challenging behavior can also help you avoid the social stigma and feelings of exclusion and isolation that many parents report.
Some research suggests that how parents direct their focus has an impact: those who concentrate on getting help, solving problems, and finding meaning in their experiences have better outcomes than those who avoid their emotions and stressors. It’s also clear that social supports can ease parent stress; this may be in the form of emotional support (family, friends, other ASD families), informational support (schools, professionals), or online communities. Other coping strategies found to be important in reducing stress include:
Optimism – Your family can cultivate optimism by shifting thoughts about why things are happening to what we can do to change them. For example, say a favorite service provider is leaving. A pessimistic parent might think they are partially to blame for the provider leaving (perhaps: she doesn’t care about us enough to stay), while a parent shifting to optimistic thinking may chalk up the loss of a provider to simply bad luck, and something that everyone experiences from time to time. The pessimistic parent may feel helpless in the face of changing providers, while a parent shifting to optimistic thinking will focus on what they can do to help the next provider be successful.
Emotional acceptance – Some parents report acceptance as a coping strategy that tempers stress. Continuously comparing an autistic child and their development to that of a non-autistic child can perpetuate anxiety. Accepting that an autistic child has unique needs, such as additional educational services and a parenting approach that is quite different from the approach used with siblings, can help ease some parental distress.
Cognitive reframing – Cognitive reframing is a coping strategy that can help families who have a child with differences adjust. For instance, parents might reframe their situation to see difficult events, rather than a difficult child, and view those difficulties as manageable—i.e., as problems that have a solution.
A growing number of studies reveal that mindfulness programs can help reduce the additional stress experienced by parents of autistic children. Generally, programs consist of meditation, focusing on physical sensations, and letting go of thoughts. Some also include a discussion of stressors or light stretching. Parents participating in mindfulness programs report decreases in stress and depression, improvements in sleep and health, and increased self-compassion and feelings of well-being. In a study that paired mindfulness practice with training in positive behavior supports, the mothers experienced stress relief, while simultaneously learning strategies that significantly reduced their children’s aggressive and disruptive behaviors.
Raising a child with communication and behavior challenges is incredibly stressful, but it doesn’t have to sentence you to a life defined by stress. Do your best to recognize when the pressures of your life are creating a chronic stress situation, and take steps toward relieving the strain. This will not only improve your own health and happiness but also benefit your autistic child and the entire family system.
To read one mom’s account of the stress of parenting, see “To All the Other Parents of Children with Special Needs: I Feel You.” To dive into the research on coping strategies for parents and caregivers of kids with autism, see these studies:
Bazzano, A., Wolfe, C., Zylowska, L., Wang, S., Schuster, E., Barrett, C., & Lehrer, D. (2015). Mindfulness based stress reduction (MBSR) for parents and caregivers of individuals with developmental disabilities: A community-based approach. Journal of Child and Family Studies, 24(2), 298–308. https://doi.org/10.1007/s10826-013-9836-9
Da Paz, N. S., Siegel, B., Coccia, M. A., & Epel, E. S. (2018). Acceptance or Despair? Maternal Adjustment to Having a Child Diagnosed with Autism. Journal of autism and developmental disorders, 48(6), 1971–1981. https://doi.org/10.1007/s10803-017-3450-4
Ekas, N.V., Lickenbrock, D.M. & Whitman, T.L. Optimism, Social Support, and Well-Being in Mothers of Children with Autism Spectrum Disorder. J Autism Dev Disord 40, 1274–1284 (2010). https://doi.org/10.1007/s10803-010-0986-y
Fox, L., Dunlap, G., & Powell, D. (2002). Young children with challenging behavior: Issues and consideration for behavior support. Journal of Positive Behavior Interventions, 4, 208–217.
Lucyshyn, J. M., Dunlap, G., & Albin, R. W. (Eds.). (2002). Families and positive behavior support. Baltimore, MD: Brookes.
Siah, P. C., and Tan, S. H. (2016). Relationships between sense of coherence, coping strategies and quality of life of parents of children with autism in Malaysia: a case study among chinese parents. Disabil. CBR Inclus. Dev. 27, 78–91.
Singh, N. N., Lancioni, G. E., Karazsia, B. T., Myers, R. E., Hwang, Y. S., & Anālayo, B. (2019). Effects of Mindfulness-Based Positive Behavior Support (MBPBS) Training Are Equally Beneficial for Mothers and Their Children With Autism Spectrum Disorder or With Intellectual Disabilities. Frontiers in psychology, 10, 385. https://doi.org/10.3389/fpsyg.2019.00385
Walsh, C. E., Mulder, E., Tudor, M. E. (2013). Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping. Research in Autism Spectrum Disorders, 7, 256-264.
The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.
Resources Discussed:
Cosmic Kids Yoga: https://www.youtube.com/CosmicKidsYoga
Raz Kids: https://www.raz-kids.com/
Epic: https://www.getepic.com/
Prodigy: https://www.prodigygame.com/
DreamBox: https://www.dreambox.com/
Out School: https://outschool.com/
Story Time from Space: https://storytimefromspace.com/library/
Bark: https://www.bark.us/
For more helpful tips and resources, sign up for our Parent Newsletter at learnbehavioral.com/parentresources.
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).
The sudden disruption in routine due to COVID-19 is challenging for all individuals to manage as we adjust to a new, and hopefully short-lived, normal of staying at home and ceasing most of our regular activities. For families of individuals with autism and other disabilities, the disruption can be especially challenging.
Richie has a conversation with Katherine Johnson, BCBA and founder of Advances Learning Center to share helpful tips and resources for you and family during this time.
Katherine has a Master of Arts degree in Behavior Disorders and Applied Behavior Analysis from Columbia University Teachers College and is a Board Certified Behavior Analyst (Charter Certificant). Katherine has taught in both private and public schools at pre-school and elementary levels and has provided educational consultation services to public schools and home programs. She has taught undergraduate behavior analysis courses at Northeastern University and graduate level courses at Simmons College, has provided parent training through the May Institute, and is on the Advisory Board for the undergraduate psychology program in Applied Behavior Analysis at Regis College. Katherine also currently serves as Vice President of MassCAP.
Resources Discussed:
Go Noodle: https://www.gonoodle.com/
Privilege Points: http://www.privilegepoints.com/
For more helpful tips and resources, sign up for our Parent Newsletter at LearnBehavioral.com/parentresources.
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).
Dr. Carla Mazefsky is an Associate Professor of Psychiatry at the University of Pittsburgh School of Medicine, where she is Co-Director of the Center for Autism Research (CeFAR) and the Director of the Regulation of Emotion in ASD Adults, Children, & Teens (REAACT) Research Program. She is a past recipient of the INSAR Ritvo-Slifka Award for Innovation in Autism Research. Her current studies take a lifespan approach, with an emphasis on adolescence and the transition to adulthood. Her research focuses primarily on emotion regulation and associated mental health and behavioral concerns in autism spectrum disorder (ASD), including the mechanisms underlying emotion dysregulation in ASD and the development of new assessment and treatment approaches. She is co-editor of the Oxford Handbook of Autism and Co-Occurring Psychiatric Conditions, author of the Emotion Dysregulation Inventory, and co-author of the Emotion Awareness and Skills Enhancement (EASE) Program.
Susan W. White is Professor and Doddridge Saxon Chair in Clinical Psychology at the University of Alabama. Her clinical and research interests include development and evaluation of psychosocial treatments that target transdiagnostic processes underlying psychopathology. She is associate editor for the Journal of Clinical Child and Adolescent Psychology and the Journal of Autism and Developmental Disorders, and she the Editor in Chief of the ABCT Series on Implementation of Clinical Approaches. Her research has been funded by the National Institutes of Health and the Department of Defense. She received her PhD from Florida State University.
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).
Welcome to our All Autism News series! Whether you’re a parent, advocate, professional in the field or individual with autism, All Autism News is here to give you a summary of this past month’s biggest news stories affecting the autism community.
New U.S. autism guidelines call for early treatment
Spectrum – Pediatricians should start treating children who show signs of autism even before tests confirm a diagnosis, according to the newest recommendations from the American Academy of Pediatrics.
Autism prevalence in the United States explained
Spectrum – The rise has sparked fears of an autism ‘epidemic.’ But experts say the bulk of the increase stems from a growing awareness of the condition and changes to its diagnostic criteria.
Study ties gene active in developing brain to autism
Spectrum – Mutations in a gene called ZNF292 lead to a variety of developmental conditions, including autism and intellectual disability, according to a new study.
A Quarter Of Kids With Autism Go Undiagnosed, Study Suggests
Disability Scoop – A substantial number of children who meet the criteria for autism are failing to receive a formal diagnosis, according to a new study based on data from the Centers for Disease Control and Prevention.
Early life experiences may shift severity of autism
Spectrum – A child’s environment exerts a strong influence on the severity of her autism, according to a study of 78 pairs of identical twins in which at least one twin has autism.
When My Daughter on the Autism Spectrum Asked Why I Was Crying
Yahoo! – My daughter, who is 8 years old, is on the autistic spectrum. She was diagnosed over a year ago, has been in ABA therapy for about eight months, and has been making slow but still steady progress. However, that doesn’t exempt us from bad days. Yesterday was one of them.
Intelligence, behavior shape adulthood for people with autism
Spectrum – Just two factors assessed in childhood predict how well people with autism will function as adults, according to a new study: intelligence quotient (IQ) and behavioral problems such as hyperactivity.
Early Treatment for Autism Is Critical, New Report Says
The New York Times – The average age of diagnosis is now around 4 years, but the goal is to get it well under 2, she said. And children who are at higher risk — for example, those whose siblings have A.S.D. — should receive especially close screening and attention.
With Blog, Teen with Autism Gains Voice
Disability Scoop – A few years ago, Mitchell Robins wasn’t able to tell anyone precisely what he was thinking. He lost the ability to speak when he was 4 and relied primarily on a system of pictures and limited sign language to tell his parents and caregivers what he wanted to eat or when he felt sick or how he wanted to spend his time. Then his parents realized he could spell.
Siblings of autistic children may have distinct facial features
Spectrum – Siblings of autistic children, like those with the condition, tend to have faces that are more masculine than average, according to a new analysis. The analysis classified features such as a wide forehead and long nose as masculine.
