Just in time for Autism Awareness Day yesterday, a new article highlighted ten things we didn’t know last year about autism. At Cusp Emergence, much of our contact is with families of young children who are either newly diagnosed, are in the early stages of treatment, or are transitioning to school placements. We are challenged by these findings daily, and we need to find new ways to help families and providers make the most of early years. You can link to the original article here. Below are some of the findings, with links to the source article for each. 

“1. High-quality early intervention for autism spectrum disorder (ASD) can do more than improve behaviors, it can improve brain function. Read more.” 

The study above examined ESDM (Early Start Denver Model) at 20 hours per week of therapy. Earlier this year we linked to additional evidence showing effects of pivotal response therapy, another set of behavioral interventions, on brain activity.

“2. Being nonverbal at age 4 does NOT mean children with autism will never speak. Research shows that most will, in fact, learn to use words, and nearly half will learn to speak fluently. Read more.”

Many students whom we have been fortunate to support, have gained language after intervention, after histories involving long-term periods of nonverbal communication.

More importantly, virtually ALL learners can make progress in functional communication, when the functions of their difficult behavior are carefully examined in the context of a strengths-based assessment. For an individual student, we discover what she needs and wants to communicate, and therapy then expands her access to, and engagement with, the world around her.

Why is it so important that we understand ALL learners can make progress with functional communication? Because it is so important to keep trying, to not give up. Years ago in a robust metroplex school district, I was an undergraduate, un-schooled, interventionist level trainer assistant for special education teachers participating in an ABA training. My first task seemed daunting: approach a student in the corner, sitting in a wheelchair alone, to discover whether she had a communication system at school, how she used it, and determine how to support teachers moving forward. This beautiful high school student remained belted in her chair looking vacantly off to one side most of the time, without a PECS system or vocal or verbal repertoire that the teachers knew of. As I built rapport with her, pairing myself with her favorite songs as we sat together in her loud classroom, I noticed she moved her hands a few seconds after I moved mine. I was practicing some basic signs as I attempted to establish communication with her. After a few minutes I noticed she was moving her hands “intentionally”, and that the signs she was making looked sort of like mine! At least, they were shape-able. We began to teach her basic signs for “music” and “eat”, and within the first week of our summer training, her teachers and paraprofessionals were struggling to grasp that this whole time, after years of sitting in her wheelchair not using expressive language, this 15 year old student was capable of sign language to communicate at least 5 basic requests. Was she capable of this the whole time? She had not used much problem behavior and, the teachers readily admitted, was not “a squeaky wheel” and did not demand much attention. 

“3. Though autism tends to be life long, some children with ASD make so much progress that they no longer meet the diagnostic criteria for autism. High quality early-intervention may be key. Read more.”

All students can learn. And when learning starts early, we often get farther!

How do you meet diagnostic criteria? By acting and behaving in ways that are consistent with the diagnostic criteria. Currently, there are no reliable biomarkers or blood tests that denote “having autism” or show where someone is “located” on a spectrum.

But while this fact is indisputable—that some children with ASD do make so much progress as to be “distinguishable” from other children who never met the diagnostic criteria—it is important to support families to understand the true life long path through supporting a family member who may have autism.

It is important to understand that there may always be new challenges that come with development, exposure to new social environments, and learning. As a parent of an 18 year old expressed to me recently, being able to plan for transitions requires being realistic and supportive even when we hoped it would all be over by now. 

“4. Many younger siblings of children with ASD have developmental delays and symptoms that fall short of an autism diagnosis, but still warrant early intervention. Read more.” 

One of the most pressing questions may be, if the delays and symptoms of younger children fall short of a diagnosis but warrant intervention, how do you fund it?

Recommendations:

• Insure all families and practitioners in your practice or community understand that having an older sibling with autism is a risk factor for the younger siblings. Younger siblings can be referred to early intervention (in some cases, funded by a state fund in which the child can access ABA (sometimes under the label Social Emotional Support), OT, SLP, and other services to prevent falling behind in language development and social interaction.
• Often, having an older nonverbal model in the home can prevent younger children from using skills that would otherwise emerge sooner. For example, a younger child may imitate the behaviors that result in meeting his older sibling’s needs. The younger child may imitate pulling parents around by the hand, tantruming to access food, toys or attention. The younger child also may not have adequate verbal models. So it is recommended to use powerful strategies for increasing language, with younger siblings of children with autism, even if those siblings  have no diagnosed delays.
• Families can attend a workshop and learn skills to arrange their home environment to promote language and insure they respond consistently to behavior.
• When families begin providing expansions and elaborations on every utterance, and using contingent access to help their children learn social interaction as a basic part of getting needs met, younger children who have been slow to develop speech, often start to talk more. 
• If a family is considering preschool, younger siblings may benefit from a stimulating environment where language promotion and appropriate social interaction is built into the daily lives of the students. Integrated preschools for children with autism and their typically developing peers may be good options for siblings of students with autism, as the skills they practice daily at school, will be useful and powerful in their daily home lives. 

“5. Research confirms what parents have been saying about wandering and bolting by children with autism: It’s common, it’s scary, and it doesn’t result from careless parenting. Read more.”

Recommendations:

• Families can develop a basic family safety plan that includes preventative environmental arrangements (such as latches near adult height to prevent unlocking and opening doors), preventative teaching, responsive strategies, and the family’s emergency plan. They can follow up by educating community members on their family plan, including appropriate law enforcement agencies and a responsible party in any community environment (a school, a church, a grocery store) their family member frequents. Pre-teaching can include establishing high compliance with safety instructions such as “stop” and “come here”, by strengthening these skills when it is NOT a crisis, and pre-cuing, prompting, and reinforcing appropriate behavior at all times to keep the family member ready to use safety skills.
• Talk to your behavior analyst about how to “bring safety behavior under instructional control” and develop a plan for teaching these skills, if you have not addressed them.
• Even though schools often refuse to initiate a behavior plan for a student with an IEP until there has been demonstrated danger, learn your rights as a parent by consulting with an advocate or reading. If elopement or wandering has occurred in the home or community, demand your student has an appropriate safety and health plan, and behavior plan with preventative components. 

“7. One of the best ways to promote social skills in grade-schoolers with autism is to teach their classmates how to befriend a person with developmental disabilities. Read more.”

If number 5 was one of the more important points for safety, THIS point may be the most powerful one in terms of potential for social interaction.

At a recent IEP meeting, we listened with disbelief to our client’s school team insist a beautiful 3 year old child simply “didn’t enjoy” his peers’ interaction, so they had given up because it was quite difficult to promote interaction. Instead, they had decided to make his school day one that was filled with 1:1 interaction with an adult. In my experience, while it is true that many children diagnosed with autism do not initially “enjoy” interaction with peers, they begin to enjoy it almost immediately when the peer is the one doing the asking! Much research supports peer mediated instruction as one of the most powerful technologies for teaching students that it is fun, useful, and easy to interact with their peers.

Teachers and schools who would like to learn easy techniques for helping peers learn to initiate to their students with autism, can sign up for the School of Play or ask their local behavior analyst for help.