On The Spectrum; Get on the Bus
For children with Autism, experts say, the earlier the clinical intervention, the better. But in some parts of Virginia, there are no trained specialists nearby and that makes it difficult to get treatment.
That’s where the Virginia Tech Mobile Autism Clinic comes in; a reconditioned RV turned into a mobile autism clinic, that takes the treatment to them. And those extraordinary outreach efforts just won the team a 2019 Innovative Rural Award from the Virginia State Office of Rural Health, for going the extra mile.
Psychology profesor Angela Scarpa, founded the Virginia Tech autism clinic in Blacksburg that later spawned the Mobile Autism Clinic, known as the MAC. She says the whole idea came about because it was so difficult to access services for autism, “and knowing how hard it is, even in our own region,” Blacksburg, we knew it would be “that much harder for people who lack the resources or are geographically isolated. And in fact, the people in our rural communities face exactly those kinds of barriers.
Grad student, Ashley Muskett made the hour and a half drive to Marion, Virginia in the MAC. It goes there every other week, alternating with visits to Galax. But that’s perhaps the only constant in the mix, when it comes to a condition like autism. “They say if you’ve met one person with autism, you’ve met one person with autism, because all the kids are so different.”
And while the stereotype suggests it’s hard to make connections with people who have autism, Muskitt slashes that notion.
“I just love kids with autism, and I learned that through teaching kids with special needs swim classes. I had a student with autism who I just really connected with and really like working with and that lead to studying psychology in under grad and that led to going on to research that and study it in grad school.
Muskitt points out, Autism is a spectrum and it varies greatly.
“The very clinical definition of autism is that, to have it you have to have difficulties in two main domains; difficulties with social interactions and that looks different for lots of different people. It can be anything from, you don’t have verbal language to do that social communication, all the way to, you don’t understand the complexities of social interaction, like the back and forth of conversation. And you also need to have difficulties with restricted and repetitive behaviors and that just means you have difficulties with maybe wanting things to be the same way every day, not understanding why they have to be different, wanting to do repeated body movements, so that’s why you’ll see in a lot of media, (autistic) kids are represented as kind of rocking back and forth. And, that can be a part of those restricted and repetitive behaviors.”
There can be sensitivity to sounds of running water, the texture of certain foods, sometimes there’s aggression or disruptive behaviors.
Graduate student, Jordan Albright is also on the MAC today. She points out, autism develops around the age of 2 to 4. It’s a developmental syndrome, not something that comes out later in life. So, a lot of work they do is parent focused because they’re the ones who would notice symptoms such as: “Difficulty meeting milestones, first words, walking, toilet training, speaking. Or, when they parents pick their child up at daycare the child is playing by him or herself. Or instead of playing with toys in a race car fashion the child is really focusing in on the wheels and spinning the wheels in a repetitive manner.”
Albright says they also see a disruptive behavior. “It’s fairly coming for kids with Autism Syndrome Disorder, or ASD because they get frustrated and they have trouble communicating that they’re upset and that can cause them to resort to aggression. We can do work with the parent and the children to give them coping skills.
No matter what level or variety of autism, clinicians say, there are definitely ways to improve the situation with individualized treatment.
“Hi come on in!”
A mother is bringing her child into the waiting are of the MAC. As soon as you step inside, it feels, homey, not clinical. In the front, just behind the driver’s seat is a seating area for families, that are waiting for their sessions.
Anxiety is one hallmark of autism, but of course, anyone who has anxiety does not have autism. Albright heads to the back of the MAC, a former bedroom turned meeting space where they hold therapy sessions tailored to each child.
Today Albright is working on anxiety with a child who has autism, “So our treatment is exposure therapies. We’ve created a list of things she’s anxious about and we work on exposing her to those different things, prompting her to use her coping mechanisms so she can work through that anxiety.”
Albright talking to 7 year old June: “But then we’re going to use our different skills and I want you to tell me how nervous you feel when we go thru that ok?”
“OK.” Says June so before we get started let’s look at our different skills together.”
June, we won’t use her last name, is highly verbal and responsive, just adorable really, to the point that you might not think she has autism.
A great reader, June flies through her list of coping mechanisms from a sheet of paper in front of her.
"Feeling frightened? Check your body, check your thinking, attitudes and actions can help, use your skills, deep breathing muscle relax, self talk, reward yourself, let's celebrate!"
And she wants to know: “When are they going to hear me on the radio?”
June’s mother, Maria says she come a long way already and it’s clear she’s extremely bright, but she says she saw the signs in her daughter early on and knew she wanted to learn how to help her cope. “When she was about 9 months old, we noticed that she struggled with anxiety and would cry and shudder when people would laugh or become boisterous and loud, so we really knew there was something going on. So, at 2 years, 4 months she was diagnosed with autism and since then we’ve been trying to help her as best we can.
The percentage of children who develop Autism in this country has been rising steadily. But that doesn’t necessarily mean there are more people than before with the syndrome.
In 2003, the rate of autism was one in one-hundred sixty-six children. Today, it’s one in fifty-nine. And experts are not entirely sure why.
Virginia Tech psychology professor Angela Scarpa is organizer of a conference on autism in Blacksburg April 26th. She says, “There is definitely more awareness. That is a fact. We are better at recognizing and diagnosing autism. Whether there’s something beyond that is still an open question.
Decades ago, autism was a little know condition seldom seen by the general public. Skarpa says part of that may be because treatment of children with autism used to be very different than it is today.
“Before the 60s people with autism were generally institutionalized and their parents went through years of psychoanalysis to try to, I guess, fix the situation. “
But a University of California Professor, the late Ivar Lovaas was the first to use a different approach.
“I should say, it really was a paradigm shift.” Skarpa says Ivar Lovass realized that these children needed some specific skill building and he developed a behavioral program to educate the children and build their skills that was very successful. So, since then we’ve been building up on the behavioral treatments and cognitive behavioral treatments to expand on the work that he’s done.”
Some researchers are looking at toxins and how they affect the brain. “The way I look at it” says Skarpa, “anything that could affect the brain could affect autism.
Some 20% of cases include what’s called, a regressive form of autism. “Where children seem to develop normally and somewhere in the first 18 to 24 months, they lose the skills that they had.” Says Scarpa. Research topics abound, including how certain brain regions are affected, “what’s called functional connectivity among the brain regions.”
Skarpa’s own son was diagnosed with Autism around the age of 2. He’s now 17. Back then it was very difficult to find services to help him. So, she helped found the first autism clinic in Blacksburg.
“I almost felt like it was my duty to help other people get the services they needed. So, we got training. We went to a lot of workshops, training seminars., we had people come in, experts in the field came in to train our students and myself and we learned the specialty treatments.”
People who have children with autism in Montgomery county have access to something many people don’t, the local Montgomery country school system is what’s known as an all-inclusive school, which means autistic students share classrooms with the other kids and they get the support they need.
Skarpa focuses her work today “on evidence-based treatment and looking at the emotional lives of people with autism. I’m very interested in how they cope with stressful life situations and what that means for their quality of lives.” She points out that autism is a spectrum, a continuum, “and we need to be very sensitive to that.”
And while autism does increase risk for things like anxiety and depression, behavioral difficulties, problems with relationships and even with employment later in life, that doesn’t mean all people with autism will have those difficulties. “If they don’t great, then they may not need as much support, but there are many people who do need and want that support.”
She says, “There are some people who are intellectually impaired and at the same time there are some people with autism who are brilliant and everything in between. That’s also true regarding language impairments. Verbal abilities can vary greatly.”
Many people have heard of so-called, ‘savants’ people who have extremely developed skills, usually in just one area. Scarpa says, “Savants are rare in autism, but there is a significant number that are way better than average at some skills, so-called ‘splinter skills’ like spelling or math. not to discredit or minimize those that don’ t have those skills; we need to work t help people along the whole spectrum.”
Scarpa’s son has done very well. He’s been accepted to the engineering program at Virginia Tech. “The expectations that we had for my son were absolutely no different than for any other child. We just worked that much harder to get him there.”
Skarpa tells me, with palpable pride and joy in her son, that he’s a youth leader in an origination called “I’m Determined! teaching kids s with disabilities’ all kinds of kills. One question on the application to get in, she recalls, is to talk about your disability. “My son came to me and said ‘I don’t know how to answer this question. What’s my disability?’ and I said, well autism is considered a disability and that means there are things that might be harder or more challenging for you and that are different for you compared to other people. And he looked at me and he thought about it and he was like, I was like, ‘Mom, doesn’t that just make me an individual?’ I was like, Yeah! Just write about that!”
A conference in Blacksburg, April 26th will explore the issues around autism and the public is invited:
You are cordially invited to join the VT Autism Clinic and Center for Autism Research for our 7th annual VT Autism Conference! The conference will be held at the Inn at VT in Blacksburg on April 26, 2019. Special guest speakers include Dr. Amy Drahota from Michigan State University and self-advocate Sam Leckrone. Dr. Drahota will speak about her research on “Accessing Community Treatments for ASD.” We will have multiple research talks on topics relevant across the lifespan for ASD as well as three workshops on Psychopharmacology, the I’m Determined program, and Financial Needs planning. We will also have a guest parent panel speaking about their experiences and journey as the parent of a child with ASD, lessons learned, tips for others, etc. We are excited to offer this conference and hope to see you there. Details are attached and below.
Registration closes April 12 can be completed online here.
COST: Suggested donations of $35-$50/Regular Admission; $10/Students; $50/Exhibitor Half Table; $100/Exhibitor Full Table
WHEN: Friday, April 26th, 2019 from 8am-5pm.
WHERE: Inn at Virginia Tech, 901 Prices Fork Rd, Blacksburg, VA
HOTEL: Discounted rooms at the Inn at VT are available until March 26 at this link.