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February Digest

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.

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National News

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.

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Research

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.

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Teens & Adults

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.

Our amazing daughter

Autism is a diagnosis that can be emotional for parents and families to accept. In our case, the diagnosis needed to be accepted by our family. Our daughter is amazing. She is incredibly bright, sweet, and an absolute joy to be around. As a parent, one of the most gut-wrenching things we experienced was being told time after time, “Your child has challenges, but no one knows why.” In May of 2013, we finally got our answer. Our beautiful girl has a rare genetic condition called Cohen Syndrome that causes intellectual, medical, and physical disabilities. Receiving this diagnosis was bittersweet because we finally got an answer, but we still didn’t know how to help our daughter. With a rare genetic condition like this, there are several programs, specialists, and therapies available that we didn’t even know existed. There are people with resources who wanted to help but had never heard of our child’s condition. It was very alarming for us because even though we were thankful for their help, the process can be anxiety-inducing.

When our daughter was diagnosed with Autism a year ago, it wasn’t a bittersweet moment like when we received her original diagnosis of Cohen Syndrome. It was just sweet! Autism Awareness has been raised, and there are people in the education and medical field who have experience with Autism. I fully accept that our daughter has Autism, but the fact is that a lot of her challenges stem from her primary diagnosis that is rare. I asked myself how this “known” diagnosis could help when you have to take her “unknown” diagnosis into account? The answer was ABA therapy.

Although we have seen AMAZING progress through ABA therapy in our daughter over the last year, the truth is that it cannot be contributed fully to “just” ABA therapy. ABA therapy with the right team is the answer. What makes the right team? Compassion, humility, resource-connected, knowledgeable, and experienced team members. ABA is an evidence-based practice.

We know firsthand that having a team that is compassionate and humble will allow for success. Having a child with complex healthcare needs is overwhelming. We almost always feel like we aren’t doing enough (are we acting more like advocates instead of just being mom and dad? Is our child receiving the right therapies, too many or not enough? How can we balance comfortability for a child whose world is almost always uncomfortable, but also push her to reach her full potential?). Adding ABA therapy to our already crammed schedule brought apprehension. But having the right team, takes the stress out of the equation. We (parents, child and staff) work together on proper goals and time management.

ABA is an excellent tool that I highly recommend families consider, but it’s not the only tool. Especially when working with a child who has a rare genetic condition plus an Autism diagnosis. Other resources and tools may assist families in achieving their goals. For us this meant learning about the objectives as a family together while our daughter was mastering goals. ABA works best when it’s combined with your other resources; (i.e., current therapies in place, IEP teams, community support, etc.) as this helps generalize what is learned. We have seen our daughter transfer the skills she’s learned in her sessions into her everyday life. Our daughter, recently turned eight years old, received a skilled companion dog, and is transitioning to a general education classroom. This transition and the skills that her amazing ABA team teach her have been a blessing to her, and our family. Our daughter has been showing more affection to those she cares about. She’s able to master her goals outside of her sessions and into the community (which I am unable to express how HUGE this is). She is also able to complete her homework with modifications; additionally, she can share who she is with others instead of allowing her diagnoses to define her as others think it does.

From a logical perspective, ABA therapy is remarkable in how it allows children (no matter what the diagnosis is) to learn things that other children may more readily know. From a mom’s perspective, it’s beyond amazing. This process has provided my husband and me with the support needed so we can be her parents, instead of her providers. Partnering in this way gives us opportunities we wouldn’t be able to have without this kind of assistance. There’s a saying that it takes a village to raise a child. In the early days of our daughter’s life, my husband and I would jokingly say it takes a hospital to raise our child. As her health has become more stable, and we’ve been able to focus more on her education and life skills, we agree that in fact, it takes a village to raise a child — a properly equipped village. And we are so grateful that God blessed us with her ABA team as an addition to our village.

– by Nicole

How Long Will My Child Be in ABA?

There is no simple answer to this question. Many factors impact the decision regarding the duration of an ABA (Applied Behavior Analysis) program for a child/adolescent with autism.

Whether services are provided in a home, clinic, or school-based setting there should be a detailed plan in place to guide the family through the intervention process and resources available for when services end. The following information is provided to help parents develop appropriate expectations regarding the duration of an ABA program for a child with autism.

Although there is no cure for autism, there is an abundance of research indicating that intervention programs based on the principles of ABA can have an incredible impact on a child. The ultimate goal of any intervention program is to increase adaptive behaviors and to decrease challenging behaviors to the point the individual with autism is able to function independently in daily life. The length of time a child participates in an ABA program will depend on the type of program implemented, the child’s progress toward identified goals, and the family’s ability to use the principles of ABA in everyday life.

The Program

Intervention programs may be implemented in a variety of settings. Home-based services are often delivered as part of a comprehensive or focused program. Your BCBA (Board Certified Behavior Analyst) may make use of The Behavior Analyst Certification Board (BACB®) Practice Guidelines for Healthcare Funders and Managers to inform decisions about intervention models appropriate for your family. The guidelines state that comprehensive programs address skill deficits and behavioral excesses across many domains and focused programs target a “limited number of key functional skills”. Focused programs often occur over a shorter period of time relative to comprehensive programs.

Progress

Children vary in the time it takes to acquire new skills. Further, complex skill acquisition targets such as maintaining a conversation will often require more time to demonstrate mastery than a target such as color identification. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring If the child demonstrates difficulty acquiring a targeted skill, the clinician must make adjustments to the program in order to meet the needs of the child.

There are a number of ways to monitor a child’s progress. Line graphs provide important and detailed information about a child’s learning. Criterion-referenced assessments such as The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) and norm-referenced measures such as the Vineland Adaptive Behavior Scales, Third Edition also provide valuable information. Once the child meets the mastery criteria of all goals identified in the treatment plan, the clinician may recommend a decrease in the number of one-to-one service hours.

Parents and Caregivers

An effective ABA program includes parents and caregivers implementing applied behavior analytic strategies during everyday life. The generalization of skills occurs when the child is able to demonstrate newly developed skills in a variety of environments with different people. Generalization is critical to an effective ABA program. If parents are able to teach their child new skills and generalize those skills to new settings, they are equipped with tools to address future challenges once the ABA program ends.

Putting It All Together

The long-term outcome for every family with a child with autism is different. Some individuals with autism remain at home with family members well into their adult years. Some individuals with autism live independently and pursue a career. Some individuals with autism live with some assistance provided by vocational trainers, social workers, and/or financial planners.

Many families begin their journey with autism by having their child participate in a one-to-one ABA program. One-to-one services are ended when program goals are met and parents are equipped with strategies to support their child’s learning and generalization of skills. However, parents often make use of consultation with a BCBA to assist with problem-solving specific behavioral issues. In reality, ABA is not something that has an end date. The skills that parents develop from the hard work of implementing an ABA program evolve and are used for a lifetime. Just as parents make use of strategies to promote good physical health (e.g., healthy eating and exercise), they also make use of effective teaching and problem solving learned from their ABA program.

 

Addressing Aggressive Behaviors in Children

Aggressive behavior is something that parents of children with autism or emotional disabilities are often confronted with on a regular basis. It can be a challenging, frustrating and emotionally draining experience. Through the support of a professional behavior analyst and consistent practices, parents, teachers, and caregivers can address aggressive behaviors in children and adolescents so that they can live productive and independent lives.

Many times when caregivers are faced with aggressive behavior, their impulse is to want to stop the behavior, and they may view the child as misbehaving. However, it’s important to understand that aggressive behavior is sending us a message. Every behavior serves a function— such as making a request, avoiding something, escaping a task or seeking attention. The same is true of aggression. For individuals with limited communication skills, aggressive behaviors can become inadvertently shaped by caretakers and others in their environment.

For example, a child throws a tantrum to gain access to candy. The parent gives the child candy to stop the tantrum. If this interaction repeats itself, the behaviors become reinforced and the child learns that tantruming is rewarded with access to the desired food. Next time, the parent may decide they are not going to give the child candy and so the child tantrums even louder and harder. If the parent gives the child candy, the parent has inadvertently reinforced the behavior. As parents, we all do this in very subtle ways regardless of whether our child has special needs or not, often without realizing that we are shaping our children’s behavior and strengthening the behaviors that are unwanted.

When children are small, it can be less of an issue for parents to manage aggression, or they may think that their child will grow out of it. It is easier to restrain young kids to combat and control outbursts, but if these are the only methods we use, we are not setting our teenagers up for success. It is important to understand why our kids are acting out and what they are trying to communicate. Once we know the “what” and the “why”, we can teach more appropriate means of communication to replace the need for aggression (such as making a verbal request and teaching the child to tolerate “no” when the answer is “no”). If the aggressive behaviors are not replaced by more appropriate functional behaviors, then we run the risk of shaping adolescent aggression which can include physical violence that is more serious and tougher to overcome.

If your child is demonstrating aggression, the best place to start is an assessment of his behavior to understand why the behaviors are occurring. A good assessment will tell you what the function of the behavior is, meaning— why he is acting out and what he is trying to communicate. Then a plan can be put in place to teach new methods for communicating effectively as well as reducing and eliminating the aggression using behavioral strategies.

Here are a few strategies you can use before aggressive episodes start:

  1. Give up some control over the environment or routines by offering choices; it does not matter if he brushes his teeth before changing clothes, but if having control over that routine helps keep your child’s aggression down, give up that control and let him choose. Providing choice also teaches independent thinking and problem solving which are critical skills for adult life.
  2. Prime your child by giving them a verbal “heads up” of what is coming: describe to your child when and what the expectations are for that setting.
  3. Use visual support like a picture board or a photo to help provide clear expectations for each activity or different parts of the day.
  4. Prompt and model the behavior you want to see instead of the aggressive behavior.
  5. Praise that behavior when you do see it so that it will continue to be a part of their repertoire. Remember if you like something you need to let your child know. In other words, catch them being good and if you like a behavior, reinforce it!

In the moment of the aggressive behavior, safety is most important! Do your best to keep yourself and your child safe. If you can redirect your child onto something else or an activity, that might be necessary.

Some parents of adolescents who display aggressive behaviors worry that it is too late for their child to have a fulfilling and independent life. On the contrary, it is never too late to start planning on a future for your child and working towards attainable goals. Think about what you want your child to be doing in a year from now and start working towards that today. If you want your child to ask for the desired item or preferred activity instead of tantruming to get it, start taking small steps now. If you are hoping they will have more friends in a year, start exposing your child to those opportunities and teaching the socially appropriate skills that will afford those opportunities. If you want them to have fewer aggressive behaviors, do not wait a year to start working to improve that behavior. It is never too late or too early to start working towards next year. The results will support your child in having their needs met and experiencing greater success at each stage of development. The ultimate goal is setting your child up for success and helping him achieve as much independence as possible.

-Richie Ploesch, M.A., BCBA, and Ronit Molko, Ph.D., BCBA-D

Every Child Deserves a Champion

April marks Autism Awareness Month and as we contemplate the meaning of this time, we are reminded of a quote that begins, “Every child deserves a champion”.  It strikes a chord because I think each of us can recall a moment where a teacher, a family member or someone in our community made a difference in our lives.

As parents and professionals working with children with special needs, we see it on a whole other level.  Champions are most commonly seen in the fierce determination and strength of the parents who work tirelessly to ensure their child’s rights are honored, their needs are met and their therapy schedule is adhered to.  We also see champions every day in the faces of therapists who passionately execute their job not only with clinical excellence, but with love.  Champions can also come in the form of young siblings who play with, defend and celebrate their special needs siblings – enlisting advocates in their classrooms and on the playground.

And then their are our kids and adults with autism who teach us every day that they are extraordinary, brave, different (but not less), intelligent, loving, funny, kind…and uniquely wonderful.

For all of us who know how profoundly changed we have been to know or witness a champion, let this be our cause for the month of April –  May we help bring awareness so that others can know what we know.  So that they too, can champion a child.

“Every child deserves a champion—an adult who will never give up on them, who understands the power of connection, and insists that they become the best that they can possibly be.”   -Rita Pierson

Here are some resources you can share with your community this month (and all year long):

All Autism News

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