Autism advocates pushing for greater awareness, understanding in others

Mental Health Support Series, Part 2

Autism is a developmental disorder that can be uniquely challenging because of the variety of behaviors and symptoms associated with it.

“If you’ve met one kid with autism, then you’ve met one kid with autism,” said Janel Summers, the autism consultant and special education instructional coach at the Copper Country Intermediate School District.

Summers said that Autism Spectrum Disorder now also includes several diagnoses that used to be considered separately, including Asperger's syndrome, and pervasive developmental disorders.

Some of the things most commonly associated with autism are difficulties with communication and social interaction and certain repetitive behaviors, but it can vary greatly from person to person, as autism is diagnosed on a spectrum.

“Some kids become very social outside,” Summers said, as an example.

Others might do better in music class, or in mathematics. Some might not present with any obvious symptoms. Summers described an autistic person’s skills as a line with mountaintops on it, or “hills and valleys”. And each person with an autism diagnosis has a different set of those hills and valleys.

This can make supporting people with autism especially difficult because each support system has to be individually crafted, there is no universal, or even a typical, option. Summers said that they have to meet people with autism in their usual environment and learn about them to see what kind of supports would be helpful for them.

The number of people with an autism diagnosis has been growing, according to statistics from the Centers for Disease Control and Prevention, but it’s unclear if that is because of advances in detection or an actual increase in people with the disorder. Summers said it’s more commonly diagnosed in boys, to a 4-1 ratio, but it may be due to boys' tendency to show more outward aggression that makes it easier to identify.

Autism Supports in Schools, and Beyond

Autism in education has changed. Once, special education classes kept students diagnosed with autism and other disorders apart from regular lessons with other students. Now —

“Our goal is to have 80% of our students in gen-ed [general education] 80% of the time,” Summers said.

Rather than grouping students with autism together into special education classes, the goal is to give them what support they need to succeed in the same environment as other students. Summers said a large part of this is the goal to avoid removing them from the social environment of the classroom, which is as important for them as any other student.

Supports like social stories, visual schedules, sensory tools like weighted blankets, and video models of behavior expectations are often used to help students in the general education classrooms, in addition to even more individualized accommodations.

As students prepare to transition out of high school, there are programs to help them get ready for college, job placement, and living independently as an adult.

“It’s really preparing them to live on their own,” Summers said. “It’s really neat to watch the kids go through those stages and really get ready to be totally independent.”

The Superior Alliance for Independent Living also helps with support services and planned activities.

Copper Country Mental Health also offers Applied Behavior Analysis for children with autism (0-21 years old). ABA is an internationally-used approach to teaching skills and changing behaviors, with intense data collection to demonstrate progress and an emphasis on positive reinforcement and practice through repetition. This therapy is available both in the CCMH office and the home, according to Leslie Griffith, CCMH outpatient program director.

Autism and First Responders

Interacting with first responders from the police to firefighters can be a harrowing experience for someone with autism, and difficult for both parties. While a typical child might enjoy seeing firetrucks with the lights and sirens at annual parades, a child with autism is often sensitive to loud sounds and flashing lights and isn’t going to feel comfortable in a parade atmosphere at all. In a tense situation like a car accident or house fire, someone shouting directions or grabbing at a person with autism isn’t likely to get a positive response, either.

For this reason, Summers has been working with a group called Copper Country Autism Awareness Foundation to help kids with autism be more comfortable around first responders and to teach first responders how to recognize and interact with someone who has autism.

Special sensory-sensitive events have been hosted with first responders, at the county fair, and in the emergency room. Flashing lights and loud sounds were disabled, and first responders, nurses, and ER staff were given a chance to interact with local autistic students and their parents without the pressure of an ongoing emergency.

Local first responders have also been equipped with communication tools like a CORE board, which can be used to nonverbally communicate about pain or other emergencies. The emergency room also has weighted blankets and some other things that help soothe anxiety for a child with autism.

An example of a CORE board from praacticalaac.org. Someone who is non-verbal can point at the corresponding images rather than try to speak.

Summers said she has talked with other educators for a long time about trying to bring first responders from across the community to MTU to give classes to them all at once but hasn’t been able to make it happen yet.

Within law enforcement, there’s been a movement toward greater training, too.

“It’s called Managing Mental Health Crisis Training,” Lt. Nick Roberts of the Houghton City Police Department said.

The MMHC training program is approved by the Michigan Commission on Law Enforcement Standards and is developed in cooperation with the National Alliance on Mental Illness. The training is offered by the Cardinal Group II. Roberts and another officer in Houghton are trained instructors in the program, and they work with social workers to train other officers in several departments.

Within the training is a module that focuses on autism and other developmental disorders. Unfortunately, someone with autism or a head injury can sometimes be mistaken by first responders for someone on drugs. The training helps officers recognize telltale signs and behaviors that might indicate that this person actually has a developmental disorder, and teaches them how to interact differently with that person.

“I’m not a professional in autism,” Roberts said.

The training doesn’t enable them to diagnose autism, but there are strategies that can be used in a variety of situations, and officers are taught when to employ them. For instance, Summers said presenting a CORE communications board to someone who doesn’t have autism isn’t likely to produce any helpful results, whereas it likely will if they do have an autism diagnosis. Roberts said focusing on remaining calm, and being mindful of the common autism symptoms like sensitivities to sound and touch are important, as well as tone and body language.

“We can be intimidating,” Roberts said.

He said that’s also why sensory-sensitive events are important, to give everyone a chance to meet first responders outside of an emergency situation. The MMHC training also helps them spot and take advantage of individual opportunities to connect with community members.

“We try to get to know our community,” Roberts said.

In search and rescue situations where someone with autism has gone missing, speed is of the essence.

“Right away, we know it’s going to be a lot more difficult to find that person that can’t communicate,” Roberts said.

Someone with a developmental disorder might also not understand a stranger who finds them is trying to help by pulling at them, or that a loud machine is full of people looking to bring them to safety.

Roberts said encountering someone on the job who is entirely nonverbal is “tough”, but that he always does his best.

“We do have a lot of outcomes that turn out successful because of our training,” he said.

CCAAF did not reply to requests for an interview.

Growing the Supports

Unfortunately, access to these autism supports isn’t always easy.

“Even something like getting a ride to ABA therapy is a barrier for some of our families,” Summers said.

Griffith said CCMH can provide transportation to ABA therapy and other services in cases where no other options are available for the consumer. They’ve also tried to lower other barriers to service like a lack of cellphone minutes when receiving services via the phone, as prepaid and inexpensive cellphone plans often have limited minutes.

Some families can’t afford a car or only have one that’s needed for a parent to commute to work, leaving the other without a way to bring their child to therapy, group activities, and other appointments. Even relatively close sessions could be too distant to get there without a vehicle. Summers said having more local opportunities for therapy in smaller communities, or free transportation services would be helpful for those people.

Summers said another big source of support for people with autism is the CCAAF and wished they could receive more grants.

Summers said the foundation is their “go-to” when they need something in a hurry like an unexpected Lyft or Uber ride to an appointment. They also help with things like specialty support devices, installing safety fences, and helps in other emergencies, too.

“That would be awesome if they had more monies,” Summers said. “Schools just don’t have extra funds.”

Summers said she feels like she could use three more staff members with her training at the CCISD, and her caseload is still growing.

Roberts said he’d like to see more time and money spent on training officers on how to better interact with people with autism, too. He said the pandemic caused many training organizations to move their work online, which helped reduce the necessary travel for local officers to attend sometimes-distant training sessions.

“Zoom saved us a ton of money,” Roberts said.

He thinks the MMHC training should be given to every police officer, and regularly teaches sessions alongside local social workers.

Editor’s note: This story has received multiple updates since its original publishing, on CCMH’s ABA program and available transportation, and correcting how head injuries and autism can be mistaken for drug use.