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Changes in communication are one of the first signs of autism. You know how important communication is in a relationship and that people with autism might communicate differently. Nuances people without autism might pick up on in conversation seem invisible to people on the spectrum. In this episode, autism communication expert Coleen Sparkman shares proven techniques for communicating with others who might be non-communicative. It is a powerful and necessary tool.
Speaker: Coleen
What our studies have shown and other studies as well is that children who are in an early intensive behavioral treatment program are twice as likely to end up in a general education setting as children who are getting more of a piecemeal approach, you know, a little bit of speech therapy, a little bit of about ABA, a little bit of OT, maybe a little bit of special education.
Speaker: Gene
That’s Coleen Sparkman from Therapeutic Pathways in Northern California. She’s a speech pathologist, and she has a passion for helping autistic children get up to speed with their peers, and through traditional public school. If you want to know how to communicate with a child who has autism, then you’re in the right place. This is An Introduction To Autism, a compassionate evidence-based series that provides solid information, guidance, and hope. You’ll learn about the signs your child might have autism. And how early diagnosis and treatment leads to the best outcomes. I’m your host Gene Gates. And this podcast series is produced by Dr. Jane Howard and Coleen Sparkman from Therapeutic Pathways.
So, Colleen, how long have you been working with kids who are on the spectrum?
Speaker: Coleen
I’ve been a speech and language pathologists for the past 41 years.
Speaker: Gene
Many parents are surprised a speech therapist has such an impact on kids with autism. But these kids just weren’t born intuitively knowing how to communicate, is that right?
Speaker: Coleen
Yeah, parents often land in a speech and language pathologists office first, because what they’re noticing about their young child is that they are not talking. They’re not looking like their friend’s children. They’re not looking like their other children in terms of their development. What’s happening is, we’re talking about very young children, somewhere around 12 months of age, typically developing child using their first words. So, most of children with autism, four times as many boys as girls. So boys tend to be a little later developing. So, parents, even pediatricians may say, “they’re a boy, give them a little time.”
So, then they get about 18 months, they get closer to two years, still not talking. And so what they do is they get referred to a speech and language pathologist for an assessment typically. And that’s when we start looking and saying, “Is this just a speech and language delay? Or are there other signals there that we’re looking at that say, ‘another assessment done in addition,’ because it’s not looking like it’s just a language delay?” And what you’re really noticing is, they’re just late-talking. Dad was a late talker, Grandpa is going to say, “Well, I didn’t talk till I was five.” And it could be just delayed speech and language. And that’s where a speech pathologist comes in. We want to look at that. And we want to do a barrage of assessments that really tell us what’s going on.
Speaker: Gene
So typically, 18 months or so, maybe 12 to13 months, you start to notice, maybe there’s a difference.
Now we’re getting 18 to 24 months, now when they’re two years old. The other kids around them have a vocabulary that’s different from the vocabulary they have. So, at what point does the autism become a diagnosis?
Speaker: Coleen
Right in that age range. The age of diagnosis is certainly going down because we know more what to look for. So, the fact that the first thing parents may notice is that they’re not speaking, then we’re looking at, okay, their eye contact is reduced. Or they may be looking at part of the face, but not looking at the parts of the face that a typically developing child looks at. Oftentimes, there are some great research studies out there that show that children who end up with a diagnosis of autism are often looking at the mouth, and not the whole face or the eyes or you know, the areas that are going to teach you about expression. These children have a failure to orient to their name. So, the other thing a parent might consider as well is “Are they not hearing? Is there a hearing loss?” But in an interview with them, I can talk about well, what if their favorite cartoon comes on three rooms away? Oh, yeah, they’re right there. So, we can start ferreting out some of this. They’re not imitating, like, they’re typically developing peers are. But those aren’t the things that parents may notice first. What they may notice is, they’re not talking. They should be talking and they’re not talking. There are many of those other earlier signs that once parents are aware of.
So, if you have a parent who has a child with autism already, and they have a younger sibling, they start knowing what to look for. So, oftentimes those children are diagnosed even earlier.
Speaker: Gene
So, Coleen, when you’re working with parents, is autism a loaded word? Is there a stigmatism associated with that in some way? Or are you already past that by the time you’re working with their child?
Speaker: Coleen
No, I think that anecdotally, they’re probably some differences in possibly the gender, meaning the mom versus dad. Moms often are aware that something is different. Nobody wants their child to have any sort of diagnosis that’s other than typical. You know, we all have our babies, thinking about these wonderful futures they’re going to have. So it’s scary to think about a bigger diagnosis. The nice part is, what we can say is a diagnosis of autism, there’s a lot of hope there, we have a large percentage of children who go on to very full rich lives, communicate normally. So, it’s something that we have to kind of help families through.
Speaker: Gene
So can you take me through some kind of stereotypical, something you might see or you might do that helps them learn to communicate?
Speaker: Coleen
Oh, here’s where things may be a little different in our world. Because we have put together a program where our speech and language goals are embedded within their ABA program. Because what I know as a speech pathologist who had all of these years’ experience working with children was, if they were seeing you one time a week, twice a week, even if they were seeing me daily, it wasn’t going to be enough.
So, what we’re doing is teaching all of our staff, our parents, how to do some of that early intervention, how to get into that child’s life. And our first goals that we’re looking at, are really not about talking. They’re really about engaging in the world. So, we have kids who are just not attending. And so, one of the things we talked about is we want to teach them that people are reinforcing. So, rather than staying over there and playing by themselves, they’re going to enjoy engaging with us. So, with very young children, we start with songs and fingerplays. One of the favorite things I do is teach staff, early toddler songs, or you know how to get the child to start to enjoy that because many times our children don’t, who are on the spectrum. What happens then is with the very young ones, we’re building in what we call a pregnant pause. So, you’re waiting, as you get to that kind of fun part of that song or fingerplay. And it’s often where you hear the child’s first words. They’ve heard the song over and over, and then they start to fill in. So, they communicate quite effectively. Sometimes it’s by crying, sometimes it’s by hand leading, they may lead their parent into the kitchen and put it on the refrigerator. What we want is to be able to get to the point of is them understanding that, use of speech, it’s faster, it’s more efficient, and you get what you want faster.
Speaker: Gene
When you say fingerplay, tell me what that is?
Speaker: Coleen
Itsy Bitsy Spider. So, things that actually have a motion to it, that you can engage the child with that is part of a song. So those early toddler songs, “row, row, row your boat,” there are several of them that we use. I think common for parents to use but what seems to happen is with children with autism, at a very young age, if you’re doing this and they’re not enjoying it, parents stop doing it. Because we need that reinforcement too. So, we’re getting back in there and showing them that this is how you do it. And this is how we basically teach them, meaning the child to enjoy playing, because it’s not often something they do.
Speaker: Gene
So, we know this podcast series is dedicated to young parents who are just discovering that their child may or may not have autism. What are some things that you think surprise parents when they’re going on this journey, specifically about Speech and Language Pathology that you want to share?
Speaker: Coleen
I think one of the things that is a challenge is the conclusion that I’ve come to across all these years.
And again, the reason we put Therapeutic Pathways together 25 years ago, was that my impact as a speech and language pathologist was going to be greater by building a program that could target these skills.
It’s not like I can sit down and teach a child with autism to talk. It is a skill that is based on as many prerequisite skills, skills that they need to learn first, and some of those are imitation. You don’t have to teach a typically developing child how to imitate, they just do it. They’re in the world, they’re observing and they just imitate. But a child with autism doesn’t. So, we’re actually needing to teach them those pre-requisite skills first. When we think about how early a typically developing six-month old starts imitating, you can stick out your tongue and they will stick out their tongue. It’s amazing. You don’t teach them to do that. Kids on the autism spectrum aren’t attending to that. So, they have lost out on millions of learning opportunities, from infancy through about 18 months or two years when they first get that diagnosis.
So, it’s not a decision that they’ve made, they just haven’t been attending to the world in the same way, and that’s where we need to actually intervene.
Speaker: Gene
So, the most important thing, I think, in a lot of ways is for a parent and a child to connect, and to learn to communicate with each other. Is that right?
Speaker: Coleen
Yes. And to learn how to help them enjoy playing, to learn how to help them attend to the things that are really important in the world. And that’s how a good program will lay that out. They’re going to work with that child and get them to enjoy things that they haven’t enjoyed before. So, it’s really quite fun work.
Speaker: Gene
In many ways, I think America and Americans are classified as a take a pill kind of philosophy. So I think we tend to want to go to the doctor to get a diagnosis, and then take a pill. And the pill makes everything okay. So, it really doesn’t require much more from us than the commitment to take this pill regularly, right? With autism and with pathology, the speech pathology you’re talking about, this is not something you delegate to somebody else. This is something that a parent kind of has to own and work in tandem with the pathologist. Is that true?
Speaker: Coleen
Yes, parents are absolutely partners in this. And remember, we’re not just talking about speech pathologists. I, as a speech pathologist, have done this, and do continue to, but it’s all of our behavior technicians who are working with this child as well, our behavior analysts, and parents. And so, it’s an absolute partnership. And it is a commitment. You’re not talking about a little bit of time. It’s not like I sat an hour or two with a speech pathologist. It’s a 15 to 25 hour a week program with behavior specialists who are working with your child and helping you work with them.
Speaker: Gene
So, I’m a working mother, you’ve just told me that it’s 15 to 25 hours a week of tutoring with my child. Clearly, it’s being done and people are figuring out how to do it. But as a mom, I would find that a very alarming and overwhelming idea, initially to think, “oh, my goodness, I’m going to need to put 15 to 25 hours a week into this. I have a job, I probably have more children.” So, what can you say to that Coleen?
Speaker: Coleen
Well, you absolutely have hit on some of the early conversations that are startling, I think, for parents. And I guess what we say is we have a short window. And the window is prior to kindergarten, where we really want to be able to put in all of the time, so that we can get as many of these children, what we call a catch up trajectory as possible. It is actually possible for them to catch up to the typically developing peers. We work with families, and we certainly suggest that they look for programs that are able to meet their needs. But a little bit is not enough. And so, we find families make significant sacrifices. It is one of the reasons that we open center based treatment, because it is much easier for families to not ask somebody in their home, but to have their child’s treatment done in the center. And then many of them have extended family members who are able to help, but it is tough, absolutely.
Speaker: Gene
Again it’s early diagnosis, early treatment generally leads to the best outcome, is that a true statement.
Speaker: Coleen
That is absolutely a true statement.
Speaker: Gene
So, when you talk about catching up with their peers, does this mean that in most cases, it is probable that the child will attend a regular kindergarten with their peers?
Speaker: Coleen
What our studies have shown and other studies as well, is that children who are in intensive programs, and you know, we’re talking about that 15 to 20 hours with the really young ones, it really goes up to 35 hours, once they’re three. That children who are in an early intensive behavioral treatment program are twice as likely to end up in a general education setting as children who are getting more of a piecemeal approach; you know, a little bit of speech therapy, a little bit of ABA, a little bit of OT, maybe a little bit of special education. But as a rule, what we know is if we can put that time in early and have enough, both comprehensive program and enough intensity, that we do have a much better chance at getting them the skills they need to be able to compete in just the real world in terms of having a rich social life. To be able to benefit from a typical education, and move forward to what we, you know, our clients who have been all the way through college.
Speaker: Gene
So, you have clients that have graduated college, like their peers?
Speaker: Coleen
Correct
Speaker: Gene
So, that’s a possibility. There is a possibility that my child is going to go to college, they’re going to get a degree, and they’re going to live a pretty normal life.
Speaker: Coleen
That is absolutely correct. And I would say that, what you want to do is find someone to partner with who has that goal in mind for your child. Because we don’t know when they walk in the door, which child has that as an absolute possibility, but we want to program that way for all of them.
Speaker: Gene
How much has your process changed in working with these kids over these years?
Speaker: Coleen
The biggest shift for me, for my first 15 years of practice as a solo speech and language pathologist, was that I kept running into this wall of, this isn’t going to be effective. What I know is very important to a child with autism in terms of how their treatment should look but it can’t be done by speech therapy alone. So, putting together a program like Pathways, which is an applied behavior analytic program, partnering with behavior analysts, that was the biggest shift for me, and definitely demonstrated where these high outcomes were possible. So, ABA therapy is stable. It has a particular methodology that it relies on. But I would say that across time, we continue to learn how to do things probably a bit more efficiently, and we have better data to support it.
Speaker: Gene
So, would you say today, we’re in a pretty good space of helping children develop who have autism?
Speaker: Coleen
I would say yes, probably the best space we’ve ever been in. And probably the biggest issue is just a lack of services and the growth in the field of ABA means that there are many people with less experience, which we all have to start out. But there’s just such a great need, that we continue to really work together as colleagues so that everybody can provide the best treatment.
Speaker: Gene
So now we need you to take off your pathologist hat and put on your girlfriend on it. And your best friend, who you love, is just finding out that their child has autism, what words of truth but encouragement, can you offer her?
Speaker: Coleen
Of the myriad of diagnoses that can occur, I think that having received a diagnosis of autism, for your child is one of the better ones. We know what to do. We know what works. And we have many instances of children who, again, grow into independent adults and are quite successful.
And you want to find an agency that will partner with you with that goal in mind.
Speaker: Gene
I really, really appreciate the kindness and the way that you communicate about this because it’s comforting to have somebody with your experience and knowledge, and also to be on the front lines of what’s best now in order to get the best outcome. So, thank you so much for chatting with me.
Speaker: Coleen
I enjoyed it very much. Thank you.
Speaker: Gene
That’s Coleen Sparkman, a speech and language pathologist with a passion for helping children with autism live their best lives. You’re listening to An Introduction To Autism. In our next episode, we meet Ethan, a young man who’s thriving with autism and will hear the great music he has written and performed. If you want to stay in touch with best practices to give your child their fullest life, subscribe to this podcast. You’ll also find great resources in the show notes and at www.tpathways.org. Until next time, I’m Gene Gates.