It is estimated that one in every 44 children is diagnosed with some form of autism spectrum disorder, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.
WGCU's Tara Calligan spoke with Sherri Campbell, a pediatric nurse practitioner at Golisano Children's Hospital of Southwest Florida. Her focus is on neonatal developmental follow-up and autism screening.
Campbell and her team say that an early autism diagnosis can make a vast difference for toddlers and their families.
Here is a transcript of the conversation:
Tara Calligan: Now, Sherry, is are there any updates? I mean, the common statistic that we see is, you know, that 44 that that particular number, so are there any other statistics? Or has that changed, increased decreased? Is there an update in that realm?
Sherri Campbell: We're still at one in 44, which is such a change, because, you know, we started this program in 2009. And it was one in 150, or 151, or something. And then we've had to, we have a little flyer that we send out, and we've had to change it numerous times as it becomes more prevalent.
But I think it's becoming more prevalent, because we're better at identifying it. For one thing, I do think it's on the rise for some reason that we don't understand. But we are getting much better. I think a lot of children were just lumped in the what we used to call mental retardation or cognitive delay a category without a specificity.
And I think it's making so much of a difference that we're able to make an accurate diagnosis because we can get the kids exactly what they need to be their best selves.
Tara Calligan: What does an accurate diagnosis look like? When people hear of ASD, autism spectrum disorder? If you don't know, you don't know, you know,
Sherri Campbell: Right. And it's a little bit different. It's not like a so many other conditions. There's no blood test, there's no CAT scan, there's no no specific test available to help us say definitively yes, it's autism. So it takes a little bit to get a diagnosis, because you have to, we have to use the best tools that we have.
In our area, the developmental pediatrician, pediatrician team, they would pull together lots of information, including the testing results, and make a diagnosis. After reviewing quite a bit of of information.
Tara Calligan: Could you give me an example, if I were coming into you as a child? What would my experience what would that kind of screening be like? What would maybe be asked of me as sort of an example an overview of that, if you don't mind,
Sherri Campbell: OK, our screening program is very simple. There are no strings attached, it's safe. Sometimes parents are concerned about who's going to get the information.
The parents come in with their children, we do a lot of history information, and then the bulk of what we do is a parent questionnaire. There are two different ones we use based on the child's age, but those have been standardized and proven to be, you know, accurate screening tools.
Then we will give the parents of a piece of paper that tells them if it was a "pass" or "fail" with recommendations of things that they can do to help get the children the things that they need.
Whether it's speech therapy, occupational therapy, physical therapy, sometimes we need a hearing test because hearing impairment can look a lot like autism ... we need to rule out it's almost a diagnosis of exclusion because you got to rule out a few things first.
Tara Calligan: Would you mind giving me an example maybe a couple questions that that are asked during the screening process? Because in my mind, yeah, I've no clue what that really is like.
Sherri Campbell: Yeah, and there are hallmark features that make us want to look for autism. The number one thing is a speech delay. If the child is not usually by 12 months, we see them saying mama specific for their mom or dad or papa specific for their dad and have one other work and when they're not doing that we get concerned.
Children with autism tend not to make good eye contact. They sometimes will make better eye contact with a with a primary caregiver. But if somebody else is kind of trying to initiate play with them, they don't always look up and want to you know, they just don't seem to make good eye contact.
So pointing is basically a shared experience. And, and that's a social experience, like we call it seeking joint attention where they want, you know, a child would want you to experience something with them. And that's where pointing is one of the hallmark features of a lack of, of seeking joint attention.
Tara Calligan: From anther child's perspective, they're seeing their classmate exhibit different expressions and body language, they may be thinking something isn't correct, right?
Sherri Campbell: There are many children that just have a speech delay. But it's the social skills delay, or social communication skills that set it apart.
Because many children with autism are pretty satisfied to play by themselves, they generally don't go up to other children at the park, they generally are happy to just sit and play by themselves.
Now, a couple of other things that set it apart are what we call restrictive and repetitive behaviors. And this is a tendency to line things up or spin things or stack things. It's called restricted because a lot of children with autism, for example, let's say we had some blocks, they would line the blocks up.
When we were asking them to stack the blocks, they would line them up. Then if you mess with their blocks, like say, 'Oh, let's do it another way,' they get very upset. They like generally children with autism.
And every child doesn't do all of these things that I'm explaining. I've had parents tell me that they would line up all the cans in the kitchen, they would get the cans of food and line them all up, or line up all their shoes or their socks.
Now, sometimes kids will do things like that, and it's just a quirky thing. But for the kids that really like to line up things, they don't want to do a lot of other things like whatever toys are presented to them, they just line them up, which interferes with their ability to learn about new things and new experiences. That's why it's called restrictive and repetitive behavior. It's sometimes it's spinning things.
I mean, sometimes we see kids who have incredible abilities to like, I had one child and I gave them a block a block. And they were able to spin that block and keep it spinning. I was like, 'Wow, that's amazing.'
But that child would spin everything, whatever they were given, they would spin it instead of learning more things about the block.
Tara Calligan: How does educating young children and parents about ASD help the general perception that these behaviors are normal for some people? And that they simply need different approach or support when it comes to learning, socializing etc.?
Sherri Campbell: Well, I think the world is is a better place when we all accept each other's unique abilities. Because we know all, I really firmly believe, that we're all here for a reason. And we all have a special purpose on the earth.
I've seen so many amazing children that have autistic-like behaviors, amazing, and so many ways, and we we need to value that in each other. But we also need to make sure that we help each other learn the best we can.
We can help them understand that there are other ways to play with things and everything doesn't always have to be lined up.
The earliest we can identify children, by definition at this time, is about 18 months, 18 months to 24 months is about the earliest we're working on. Usually there are subtle signs and things we can see before 18 months.
But it you know, mostly, most children do not get a diagnosis until 18 months, the average age of diagnosis is four, which is awful, it's awful. And it stayed that way for the last 20 years. Because now we do have better tools, and we're better at identifying it's still older, you know, for when we have the average age of diagnosis.
Because sometimes the kids when they come for screening, it doesn't look like autism, but it's something else. Or maybe it's just a speech delay, maybe it looks like a hearing impairment. We want to always make sure that we're, you know, not only looking for autism, but anyway, we can help any of the children that come for the screenings.
We have a lot of great services in our area. Many of the services are free. So, parents can make those calls themselves. I feel like so much of what we do is just a matter of helping people know what's available to them.
Tara Calligan: Early detection of anything, when you hear advice from medical professional, early detection of any illness, any disease, has a better outcome in terms of treatment, right? So, this is no different.
Sherri Campbell: You know, that's right. We want all the children to reach their highest potential, but not only for the children, for the families.
It's so hard in families when they don't understand what their children trying to tell [them] or we don't understand why the tags on the shirt is bothering them. Because many of the kids with autism have sensory issues.
We don't understand that there's background noise that's irritating them. Good occupational therapy can help them be able to tolerate things that are annoying to them, that caused them to act out have behavior issues. And that part bothers me that kids with ASD get in trouble for things that are really more medical.
Tara Calligan: What advice do you have for that parent right now that might be hearing this who isn't really sure how to handle this?
Because maybe their friends, other family members that have children, they're experiencing raising a child very differently than they are. I'm going to make an assumption that it's, for lack of a better word, at very minimal, frustrating.
Sherri Campbell: Absolutely, there are so many feelings, I think, that parents would have, as they realize their child is different, possibly from the children that they see. But I would encourage parents to embrace that uniqueness, but try to help them get the things that they need so that they can communicate.
Communication is so important for us to know what they're thinking, and what they love, what their passions are, so that we can make sure that they are able to enjoy their passions and and that kind of thing.
Tara Calligan: And again, these are every single month, correct?
Sherri Campbell: Yes. And it's not a set Friday, but it's one Friday, every month. Families can always call the number, (239) 343-6838. They can always call that number to find out when is the next the next screening.
It's better to call and make an appointment. And if you can't make this one, the next one will be November 3. And then we'll have December 1, those Fridays.
Tara Calligan: Anything they need to a parent or guardian or anyone should bring with them or information that they should have ahead of time anything like that other than their child?
Sherri Campbell: It's easy, it's simple, it's free. There are no strings attached. We don't need an insurance card, we don't verify insurance, nothing like that. So just come in, we'll work with what we have. And and try to help move everybody forward.
Tara Calligan: Anything else that you feel you'd like to add in terms of early diagnosis in terms of success rates, in terms of anything else that you feel you'd like to share? Thank you so much. It was fun. It was a fun conversation. So I do appreciate your time today.
Sherri Campbell: I appreciate I appreciate you helping us get the word out. But no, I just feel like every child should be screened, really, every child.
Every child is supposed to be screened. It takes the burden off of parents. Parents can just say it's the right thing to do, and bring them for screening.
Tara Calligan: Even if you're seeing no signs. If you're seeing no sign at all. What is ... there's no harm.
Sherri Campbell: That's exactly right. Because sometimes it's difficult as parents to be objective. This is the thing we love most in the world. And it's so hard to think that they've even got a stubbed toe. We know as mamas
Golisano Children’s Hospital offers free monthly autism screenings for toddlers 18–5. The next screening will be held on Friday from 9 a.m. to 2 p.m. at the Pediatric Specialist Office, 15901 Bass Road, Suite 102, Fort Myers.
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