Autism Today: A Look at How Far We Have Come and What is Still Needed

Dr. Fred Volkmar, a professor at Yale University with over 40 years in the field of autism-related studies, joins us to provide perspective on how far we have come in the diagnosis, research, and services for individuals with autism.  With all the gains, there is still a great need for more research.  As Dr. Volkmar put it, “I think until we get more parents pushing for work on adults, we’re just not going to see it. You have to put your money where your mouth is and I think the federal government needs to fund more research on adults with autism”. Dr. Volkmar also discusses his latest book written with his wife, Dorothy Goodwin which aims to provide parents with practical help for their family.

For More Information:

Book: https://lrnbvr.com/wiley
Yale Autism Seminar: https://lrnbvr.com/yale-autism-seminar
Center of Excellance on ASD: https://www.southernct.edu/asd-center

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

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.

How can Parents Embed Language?

Many people think of speech-language pathologists (Speech Therapists or SLPs)as professionals that work with people to improve their speech (also called articulation or fluency), but a big piece of SLPs job is to help children with language development. Language is so important for individuals to function in school and life. When children have a developmental delay that impedes their ability to effectively communicate, SLPs work with parents, teachers and other caregivers to develop strategies that improve language acquisition.

Children learn language and communication from their environment and from their experiences and interactions with the people in their environment. Studies have shown that on average, about 90% of the words used by children by the age of three come from their parents’ vocabularies. Children imitate the number of words spoken, the length of conversations and the speech patterns of their caregivers.

This is why it is so important for parents and caregivers to actively engage their infants and children by talking to them as much as possible. The number of words a child hears per day will greatly impact their vocabulary and their language development, and ultimately this impacts success in many other areas for children as they develop. It does not need to be complicated- simply noticing your environment and commenting on it to your child is all it takes to stimulate your child’s learning of language and communication. It’s the frequency that matters.

One of the easiest ways to encourage the learning of language and communication is by encouraging talking during your normal, daily routines. Activities such as bathing, dressing, mealtimes, cooking, doing laundry, going for a walk, driving in the car, and grocery store shopping are all typical daily routines and activities during which you can embed all kinds of important skills that we want kids to learn (see reverse for 10specific ideas).

Below are ten specific skills related to language development with examples of how to insert those into daily activities:
1. Joint Attention Skills:

When looking at pictures, reading books, or even just playing with children, it is important that the child looks at the object, picture, or toy that you are talking about. This ensures that the child is listening and is able to understand the object or picture being labeled and described.

2. Turn-Taking:

Teaching children to respond to physical and verbal directions sets the stage for understanding how to share between two people. For example, when playing with a toy car, if the parent pushes the car to the child and says “vroom-vroom”, the parent waits for the child to respond by pushing the toy car back to them and imitating the sound.

3. Language Stimulation:

During all kinds of daily activities, talk to your child about what you are doing, seeing, hearing, etc. in your environment.

4. Play Skills:

Through play, children often show us what they understand about the world. This is how children discover and learn about objects, people and the world around them. Play with your child often and talk as you play about what you are doing.

5. Fill in the blank:

Set up a predictable, language routines, for example, set up a familiar phrase and purposefully leave out the last word, i.e., While singing “the wheels on the bus go round and ____, round and _____.” Or while reading “brown bear, brown ____.” Gradually make the task more complicated, i.e., during a favorite book, you can exclaim, “Oh, no…look…Clifford is laughing…he feels ____.” Prompt your child by looking at them and waiting for them to reply. Once you do this a few times, they will catch on.

6. Provide choices:

Provide choices instead of asking questions so your child does not have the option of answering “no” when you want to stimulate interaction. Instead of asking your child “Do you want to play with your cars” ask “Do you want to play with your cars or train?”

7. Picture walk: 

It is not necessary to read every word in a book as they can often be too wordy and confusing for the early learner. Instead, encourage your child to look at the pages and guess what is going on. Set up a familiar structure to help your child express herself—go through the book and point out familiar nouns/verbs using the phrase, “I see___”… “I see a puppy.” “I see a sun” while pointing to the object. Next, take your child’s finger and put it on an object you are sure he/she is familiar with and use the fill in the blank procedure “I see a _____ (CAT!)”.When your child becomes familiar with the routine, he/she will begin to say the phrase by herself. This sets up the routine of “my turn-your turn”.

8. Out of reach:

Put desired objects in out of reach places to encourage your child to request and ask for help. A natural instinct for parents is to make everything easier for their child—but many times we are actually doing a disservice when we anticipate our child’s every need. Once a child realizes the power of language, they will talk for what they want.

9. Confusion:

This can get your child talking and it is a nice time to introduce early language concepts in a very concrete way. So—the next time you are at the table and your child asks for peanut butter—give him regular butter instead. Wait for him to tell you that this isn’t what he asked for—at that point you can say “But, Didn’t you ask for butter?”—“NO! PEANUT butter mommy!”—“Oh, I get it now. Peanutbutter and butter are the same in a lot of ways—we can spread both of them on bread, they are both soft and they both have the word “butter” in them! But, they are also very different…peanut butter is a darker color—more like a light brown—and it is sweeter.”

10. Ask and then, Listen:

Once your toddler is talking, start teaching them to initiate conversations, and listen, a lot. You will be surprised once you stop talking about how much more your toddler will talk. This will give your child an opportunity to practice initiating communication and then you can let your child take the lead. Initiating conversation lays the groundwork for many social skills that are so important for future development.

-by Amy Hill, M.A., CCC-SLP and Ronit Molko, Ph.D., BCBA-D

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