In this video, you'll hear from Amy Kratchman, the parent of 16-year-old Jonathan, who was diagnosed with autism at CHOP when he was 3 years old. Amy discusses the research studies Jonathan has been a part of as well as what it's like to partner with CHOP in caring for her child.
Autism Care at CHOP - A Parent's Perspective
Amy Kratchman: Hi, my name is Amy Kratchman and I'm the parent of a 16-year-old son, Jonathan, who was diagnosed with autism here at CHOP when he was 3 years old. So we've been coming to CHOP for a really long time for all of Jonathan's treatments. He's been followed here for his autism. He's participated in many autism research studies here at the Hospital. And he's also seen many different departments throughout the Hospital, because, as you know, autism comes along with many different issues — GI issues, he has allergy issues, the list could go on and on.
And the one thing that has really been so rewarding for me is that I've been able to see such tremendous differences in the way the Hospital has approached Jonathan and has cared for him. So in the beginning when he used to have to have his blood drawn for whatever reason, it was a major disaster. And we used to spend a lot of time trying to actually get the needle in and get the blood that he needed to get. And now things have come such a long way that not only do we have a way to prepare Jonathan so that when he comes in for blood work he knows what to expect and it's not as traumatic for him, but he was recently here in the Hospital for an inpatient visit and also for an MRI, and the Hospital prepared him so well. The staff worked with him and really went through with him all the details of what he needed to expect from his test. So with an MRI they played the noises he would hear in the machine. They gave him like what he would have on his, you know, any touches he would have from the equipment. And that made the process go so much easier that actually the nurses and the techs all said that they couldn't believe how still he was throughout the test and how it was non-eventful.
CHOP has always had a long history of partnering with families and that's really what's drawn us here to the Hospital. You know, every step of my son's care, including his diagnosis, we've always partnered with the doctors, the nurses, the staff, all along the way. And what's been so nice is that everybody is really interested in hearing feedback from families. So most recently CHOP has started an autism family partners group. And the idea behind them is that they can give feedback to staff instantaneously on anything that we're working on here at the Hospital. So it could be from, you know, how we design a new building just to make sure that everything that goes into it, including the paint, the lighting, that it's really autism friendly. So this is just a really nice way for CHOP to go straight to the families and say, "What will it take to make your child's experience here autism friendly?"
One of the things we love about coming to CHOP is that not only is my son Jonathan able to receive the coordinated care he needs for his autism, but we've also been a part of research that takes place here. So very innovative research. The Center for Autism Research really leads the way in all of the different therapies that work for kids with autism and really exploring new ways, new medications to help the kids. And we've been able to be a part of that. So Jonathan has been participating in research studies at the Center for Autism Research. And we've signed up for autismMatch, that way any research projects where they're looking to recruit more kids comes through in our e-mail. So we're able to really pick and choose, and Jonathan has gotten to the point where he loves them. He loves participating in them because they're not scary to him. Some of them he's able to play video games in. And it's really a nice way for us to be able to give back and for him to know that he's also giving back and helping other kids with this disability.
These are just some of the ways that we've been able to participate and really partner with CHOP as they continue to really make everything that they do here autism friendly. And if you want to learn more about it there's a wonderful website, www.chop.edu/autism. And there you can find all the information about the different programs that we have here at the Hospital, how we're really making improvements to help the care for children with autism across the Hospital setting. Plus, if you're like my son Jonathan and you really do love doing those research studies, it's a wonderful way to give back. And they're not scary studies, they're actually very rewarding. My son has gotten a lot out of them. And you can find out ways on how to participate with that by connecting with the Center for Autism Research and also by going to the www.chop.edu/autism site. They will be able to connect you with the Center for Autism Research. And it's also a great way to find out about the different programs and the different ways that we help raise money for the research and the programs, the clinical programs here at CHOP for autism.
Autism Spectrum Disorder Research at CHOP
Steven M. Altschuler, MD: CHOP is the leading pediatric academic health system in the country.
N. Scott Adzick, MD: We're uniquely poised to do extraordinary things.
Doctor 1: We want to take scientific discovery and turn it into medical innovation.
Doctor 2: It's not a matter of if this is going to occur. It's just a matter of when.
Bob Schultz, PhD: Not all kids with autism are interchangeable. They're all unique; they're all different. But in many ways, they all share a common set of struggles.
It's only through studying the kind of causes of these problems will we begin to be able to develop effective treatments.
Tony Rostain, MD: The goal of the Center is to clarify, understand as much as we can, all of the different aspects of autism and autistic spectrum disorders so as to develop both a better scientific understanding, but also more effective treatments.
The goal always is to help children. And in the long run, the way we're going to help children is to understand that the processes — the developmental, the neurodevelopmental, the genetic, and the environmental sources of influence — that are affecting these kids.
Maja Bucan, PhD: We are bringing different fields together. We have geneticists, neurobiologists, clinicians, epidemiologists.
Tony Rostain, MD: Because now we have the ability, then, for clinicians to help the scientists come up with the right questions and the scientists to help us understand the mechanisms, if you will.
Unknown: Great things happen when people from different disciplines come together to address a problem. They spark each other's enthusiasm. They force each other to think outside the box, to think in different ways.
Unknown: We have experts in a variety of different areas, probably more expertise in certain areas than any other center in the world.
Hakon Hakonarson, MD: The genetic component is clearly very, very complex. So it constitutes multiple genes that have to interact together and very likely interact with the environment in order to express the autism genotype. So the genetics part is only one component of this, but it really integrates with almost all of the other components.
Bob Schultz, PhD: What we're very excited about now is integrating imaging with treatment, to do brain imaging before and after an intervention to try to understand how does the brain change when the behavior changes.
David Mandell, ScD: How do we use this to help them work with a school to develop an individualized education plan. How do they work with their medical professionals to develop a treatment plan. Resources that are given to the Center for Autism Research have the potential not only to make great scientific discoveries but also to be really applied in the very short term to address pressing, real-world problems for people with autism.
Bob Schultz, PhD: We need the support of everyone – of the federal government when we write our grants, of foundations, but also individual donors. It's really important because without that multi-faceted funding source, we can't do our work.
Jennifer Pinto Martin, PhD: This is an opportunity for families to contribute to science that will really make a difference. I truly believe that the research that's going on right now will begin to unravel the mysteries. We will begin to know what some of the causes of autism spectrum disorders are, and we'll be able to institute preventive mechanisms.
Tony Rostain, MD, MA: The more we understand about the spectrum, the more we realize how many people it touches, the more we learn about the brain, the better able we will be to design interventions that help.
Bob Schultz, PhD: If each family would come and help us with the research process, in the long run, we really will be able to develop the effective interventions, a deeper understanding of the mechanisms and, one day, I really hope, a cure.
Preparing for Your Child's Appointment
Terisa Gabrielsen: Hi, I'm Terisa Gabrielsen, part of the Center for Autism Research. I'm also a member of an interdisciplinary team that's working throughout the hospital to ensure that our providers are prepared and knowledgeable to serve families who have children with autism spectrum disorders, behavioral difficulties, and other developmental disorders.
As a parent of a child with an autism spectrum disorder or another developmental behavioral difficulty, you already know how difficult it is to even think about a visit to the doctor, a visit to the dentist, or even to go get a haircut. We have a setting or an environment where the child is very unfamiliar. We have a lot of things that are unpredictable. And the key to a successful visit is for the child to be cooperative, and that's one of the hardest things to do when we have all these other variables in place.
So as a parent, there are a lot of things that you can do to help the providers prepare for your child's visit. And the first thing that you can do is get on the phone with the clinic or the doctor's office that you're going to be visiting and let us know about your child. Tell us about your child's strengths and weaknesses, and in particular, tell us that your child has an autism spectrum disorder or other difficulty so we can better make a care plan that would suit their individual needs when they come.
Don't assume that the clinic or the doctor already knows or even that they can remember the specifics of your child. It's a good idea to give a call each time to give us a head's up so we can create the care plan that may include a Child Life Specialist that can be very helpful throughout your visit and in preparing for your visit. Let us know if your child has a very rigid daily routine, if your child likes to eat at a certain time or sleep at a certain time, and there may be some things we can do in our scheduling to accommodate that.
Especially, ask about wait times. There are inevitable wait times when you come to any healthcare setting, and if the wait times are long and unexpected, that can be doubly difficult for you and your family. If your child has special communication needs, let us know what those are so we can be prepared, if we need an interpreter for sign language to be here, we can do that. And if you need to bring a communication device, we want to let you know that that's okay, too.
If your child has any specific sensitivities to lights or sounds or touch or the feel of clothing, if they're sensitive to certain sights or smells, if you let us know about those in advance, there might be things that we can do before your child gets here to make some of those things a little bit more comfortable for him or her. I'm sure you know things that are bound to make your child anxious, and if you tell us what those are, we can see if we can change some of our procedures a little bit to make them a little bit better for your child.
We especially want to know if there are things that you do that can help your child calm down or can help your child feel more comfortable when they are feeling anxious, and then we can join with you in helping your child to feel more comfortable when he or she is here. These things might be pretty automatic for you, but we don't know your child as well as you do, so if you can kind of partner with us before you get here, we can be better prepared to meet your child's needs.
As a parent, you know that the key to anything is advance preparation. So go ahead and make a list of things that you would like to bring with you to your visit, and we can help you with that list. There will be wait times, so bring in things to distract your child. Bring a whole bunch of things to distract your child. These can include toys, books, DVD players, video games, things that you know are helpful to him or her if she is in a situation where they have to wait. Other things that you can think about are comforting items, things like blankets or stuffed animals or something that they like to have with them that makes them feel comfortable. Any communication aids that your child is used to, whether it be an iPad or a PEC system or DynaVox, bring with you so that your child has the ability to communicate with us how he or she is feeling and what he or she wants. Bring any of the reinforcers that you know are very motivating for your child. We have a lot of things here at CHOP, but they may not be the right brand or the right color, and you know all those specifics. So please feel free to bring those with you. If there's any special item that your child needs to be able to drink something, we'd like you to bring that, as well as anything special that he needs to take medication. There may be some liquid medications that we may want to give as part of a visit, and if that's the case, we want him to be as comfortable as he or she can, and we want them to be able to cooperate with that.
To help you with your preparation, we're also developing some social stories, some visual schedules, and some if-then boards to use while you're here in the Hospital, but we're hoping to get some of these available for your use at home, through the Internet. These can be visual representations of what the visit is going to look like so your child can become familiar with what to expect and everything that he or she sees won't be quite as unfamiliar when they get here.
Topics Covered: Autism Spectrum Disorder
Related Centers and Programs: Autism Integrated Care Program