Are you looking for resources about autism spectrum disorders in the early years?
In this episode of the Learn With Less podcast, Ayelet speaks with pediatric physical therapist, Leslie Hayden about her experience as both a professional working with children with autism spectrum disorders, as well as a parent of a child with an autism spectrum disorder.
Ayelet and Leslie discuss Leslie’s personal journey into her son’s autism diagnosis, some of the basics about early indicators of autism spectrum disorders, the ways Leslie’s professional background influenced her journey as a parent of a child with autism. In addition, we discuss Leslie’s tips and resources that have been helpful in her navigation of the world of autism spectrum disorders and that she references as a professional working with children on the spectrum.
For the last 29 years, Leslie’s first love has been early intervention, but she also works in schools, homes and in a clinic setting. She believes in celebrating each success and feels lucky to share these special moments with families.
QUICK ACCESS TO LINKS FROM THIS EPISODE:
Social Thinking website (Michelle Garcia Winner and her “Zones of Regulation”)
Learn With Less podcast episode, “Using Visual Supports for Early Learning”
Text transcript of this episode
Welcome to episode 53 of the Learn With Less Podcast. Today, I’m speaking with Leslie Hayden, a pediatric physical therapist who works with children on the autism spectrum, and mom to an amazing 18-year old son, Wes, who also happens to have an autism spectrum disorder.
For the last 29 years, her first love has been early intervention (working with infants and toddlers), but she also works in schools, homes, and in a clinic setting. With advanced training in sensory processing, she incorporates these principles in treatment and provides educational workshops to parents and teachers.
Leslie enjoys working with multi-disciplinary teams and believes empowering parents is the best way for children to succeed. Leslie is proud to be part of All About Kids, an office she shares with pediatric speech and occupational therapists. She believes in celebrating each success and feels lucky to share these special moments with families.
Welcome to Learn With Less – so glad to have you. So, I’ve asked you to come onto the show today to speak a bit about both your professional and very personal experience with autism spectrum disorders. So, first can you just tell us about your background professionally, and a bit about your personal journey into your own child’s autism diagnosis.
Leslie: Well, I think you summed it up pretty well. I’ve been a physical therapist for 29 years, and work strictly with children (because I don’t get along with adults very well – they whine too much). And so, I had a lot of background when we adopted our child at 8 months. We certainly didn’t think we were gonna go down the autism road with him!
In the prior years, I’d worked with lots of kids that were on the spectrum. Lots of different diagnoses, lots of sensory stuff. So, it was interesting to welcome a child into our child that had all these issues, but we didn’t know it at the time. He had a lot of medical issues early on, so we thought, ok, we can deal with the medical issues. And then over the years, it just kind of became a… I don’t know how you say it! We had a lot of different diagnoses, but he evolved into a diagnosis of autism – which wasn’t very shocking at the time, but looking back, we certainly didn’t expect it.
Ayelet: Right. Well, I mean… I can’t imagine that any parent does! So, tell us a little bit about… in what ways did your own professional background influence your journey as a parent of a child with autism – because, as a person who works with children, what was that like to sort of “bring that home,” and realize…
Leslie: Well, it was really interesting. You know, he… because he had so many different presentations when he was little, it was first kind of ADHD-like things, and then a lot of sensory processing things, and then a lot of behavioral things, which we didn’t know. So, I think as a professional, it was real easy for me to go, “you know what, there’s something not right here.”
And so, I was able to make connections with other people and the specialists and… and it was real helpful. And my husband laughs about this, because I speak the language. And so, being able to do that and being able to interpret, and being able to see the things that were going on and relate them to the specialists. I think that was really helpful.
Ayelet: Can you tell us a little bit about what some of those things were? You mentioned behaviors, you mentioned the sensory things. Can you tell us more about what that looked like specifically, with Wes?
Leslie: Yeah! And it was really interesting… as I was preparing for this, I was thinking back about how he looked so ADHD-like when he was a baby. With the medical issues, though, everybody said, “well, he’s adopted, we don’t know his background, it could be that… we don’t know if ADHD runs in his family.” And then, there were all kinds of sensory issues, which, again, could maybe go along with, you know, prenatal alcohol or whatever… and we didn’t have any record of that.
So, it was primarily the attention – impulsivity. He had some language deficits that we had early speech therapy for. A lot of the doctors said, “well, you know, he’s been through so much medically that you just need to let him catch up. He’ll grow out of it.” And we were like… mmmm, no. Hereon-in, the meltdowns started to occur and he was three hours, screaming, inconsolable, ripping his room apart, things like that – that’s not typical!
Ayelet: Right. About what age was that, just to give our listeners a bit more…
Leslie: About age four. Which, ironically, at age four, I started noticing seizure activity. And one thing I didn’t know, even as a professional, was that one in four kids that are diagnosed with autism also have the seizure disorder. And, you know, in my practice, I didn’t know that! And so, once we got him on medication for that, that helped a little bit. But, he was never a kid that did, you know, the typical… he always made good eye contact, he had a lot of good gestures… so it never really crossed my mind that it could be that way.
Ayelet: That it could be an autism spectrum disorder.
Leslie: Yeah! It wasn’t on the radar! It was, ok, we’ve got ADHD, we’ve got sensory, we’ve got some cognitive issues, but none of the, what I would consider the hallmarks of an ASD diagnosis were there when he was little.
Ayelet: Right. Let’s talk just a little bit about that. Because, since we have a lot of listeners who are first-time parents and caregivers, can we chat just a little bit about some of those more typical early signs that can help parents to be more cognizant about what they might want to look out for – given that, as we know, that there’s an adage in the professional and personal world of autism that, “if you’ve met one child with autism, you’ve met one child with autism” because it is a spectrum and it’s something that exists for every family and for every individual in a slightly different manner! But what are some of those typical things that we are trained to sort of “look out for?”
Leslie: Well, the first thing that we see is not babbling. In my professional world, I have been involved in ADOS evaluations as a motor person, and for those of you that don’t know, it’s the Autism Diagnostic Observation Scale. And we always, when we go into these things, we talk about, “does your child babble?” And this is early. This is around age two. Not pointing, not showing toys or things to people, limited play with toys, really poor eye contact, lack of a shared enjoyment in play, the little ones can be more interested in the objects rather than people.
Sometimes they’re really hard to cuddle, sometimes you’ll see a child that’s what you’d think “neuro-typically developing,” and then all around age two, they lose the ability to speak. So, they lose their words. The other thing that shows up is repetitive actions, so like hand-flapping, spinning, looking at wheels, looking at things sideways, so those are all things that kind of make you suspect that it could be an autism spectrum disorder.
Ayelet: And I want to make sure that we say something about, you know, if your child is simply inspecting a wheel from a side angle, it’s not necessarily autism!!! I think the danger in knowing too much is that we know too much! And, as with anything, it’s important to take all of these things, first of all with a grain of salt, but also to look at our children holistically, and to understand that… I think as far as what you were saying about the communication part, for instance.
So many of those pieces about babbling and gesture use and engaging with play, that’s the social part of communication, right? That’s communicating for a social purpose. And we often gesture and point to help another person see what we’re trying to talk about. And a child who might be on the autism spectrum is often less engaged socially with others, and a lack of gesture use, for instance, might be an indicator that that social ability is more difficult for that individual.
Leslie: Yes. And when you say that, one of the things I – our experience as parents and my experience as a professional doing these ADOS evaluations and evaluating kids on the spectrum, were that there’s a lot of different thigns that explain the early list of ASD warning signs.
You know, part of it could be hearing loss. It could be the lack of a nurturing environment. It could be prenatal exposure to drugs and alcohol. It could be severe ADHD, sensory processing disorder where, you know, they’re so sensitive that they’re holding the world kind of “back” and so it looks like they’re not engaging.
A lot of times, too, we see auditory processing disorders that explain some of those things. So, even though it’s an early list of ASD signs, it’s – you have to have a comprehensive evaluation to be able to tease out all the pieces.
Ayelet: Right – and to distinguish one thing from another, potentially.
Leslie: Mm-hmm. In my, in our case, our son was diagnosed with ADHD and a non-verbal learning disability, and the seizures, and then as we went along in his development, the seizures were controlled, the ADHD was sort of controlled, because with seizures, you can’t use certain medications because it lowers your threshold for seizures)!
And then, ultimately, after going though this process, he grew into a lot of these, like, repetitive – he does a lot of this kind of stuff, and getting stuck on topics, and having super interests that were a little odd, like with farm equipment.
Ayelet: And I just, because some of our listeners are listening to the podcast, what you were doing is, he does a lot of “this” as far as repetitive hand movements – that’s what you were modeling for us.
Leslie: Yeah, he’s never been a spinner, but a lot of children will do the hand flapping. But when he’s excited, this is what my son does… a joyful expression of who he is.
Ayelet: So, it’s sort of a movement – a changing over of the hands. Interesting. Yeah!
So, let’s just take a brief break to hear a word from our sponsors, and then we’re going to hear from Leslie about the kinds of information she found useful on her own journey, and then the resources that she likes to share with other families as a professional.
Ayelet: Alright, Leslie. As both a professional and a parent, what thoughts or suggestions, either specifically or generally, do you feel are “actually” useful for parents and caregivers who are in those beginning stages, maybe suspecting something might be going on developmentally, or seeking services, or even seeking a diagnosis. And then, the other side to that question, what suggestions do you have for families and friends who might be supporting a parent through this journey?
Leslie: Well, I think the first thing to tell parents is to trust your gut. If you think there’s something going on, there probably is. You know your child better than anybody in the world. And so, I would encourage people to seek out good medical care. Go to your pediatrician, say, hey, this is what I see, and then start the process of weeding it out. It could be… it could be nothing, but I always say that non-diagnosis is just as important as a diagnosis.
And then, the other thing, I was talking with my husband about this and… because we had so many diagnoses on our journey: don’t focus on the diagnosis! If you suspect something, and you get a referral for a speech therapist or an occupational therapist or a physical therapist, or a counsellor, let those evaluations kind of guide what you do. Having a diagnosis is good, because in some states you can get extra help for kids that have ASD. But, the chances are, that when you go through those therapies, you’re going to be going through and addressing the things that the child needs anyway.
So, the diagnosis isn’t as important. And, as always, the diagnosis isn’t your child. So, one thing I would also share as a parent is, because I was a pediatric PT, it was important to me that my child continue to move on the developmental path and… he had some other ideas! So, I spent so much time trying to fix him that I missed a lot! So, I really tell my families, enjoy. Enjoy your child. Enjoy all the pieces of your child. Yeah, you can work on therapy things, and that’s great!
You integrate it into what you’re doing. But your child has to be a child, too! And I think that’s super important. A comprehensive eval will help weed out things, and, you know, when I say comprehensive, I say occupational, physical and speech therapy. Because there could be something else going on that mimics Autism, but it’s not! Then you can go on and have somebody, maybe, that has the right credentials do an Autism – the ADOS, which is the Gold Standard of diagnosing, but it’s not a stand-alone thing.
Let’s see, I had a couple others. The seizure piece: because that really blindsided us! And, we work in our clinic with a lot of kids on the spectrum that that’s never even come up for. And, we see it, and then we refer back to the doctor, and sure enough – that’s what’s happening! And once you get that addressed, then the child’s a lot more available.
Ayelet: Yeah. I like that word. That’s a very apt way to describe it. I think one thing that stands out for me about some things that you’ve said is that comprehensive piece that none of this stands alone. And one thing that might be happening may be related to something else way over here. I think that this goes back to what you were saying about having a diagnosis: it’s not about the diagnosis, it’s about having an understanding of what’s going on with your child. Where your child’s strengths are, as well as where the child’s weaknesses are, so that you can use the strengths to build up the weaknesses and work on all of that skill development in conjunction, together.
Leslie: Absolutely. You know, the other thing that you had talked about is how to help – how family members and friends can help. You know, a couple things you may experience is, “oh well, you know, Autism is such a hot topic now, you’re just looking for things.” So, that’s – that’s a real thing. And we had some push back in our family, you know, “oh, that can’t be it.” And then once we went through everything that it wasn’t, and we were left with what it is, we went to autismspeaks.org, and that’s a really good website for being able to talk to people about it.
And they have a specific link about how to explain this to family. And then once, I copied all that off, handed it off to all my family, and they were like, “oh, that makes sense, now!” And so they’ve been able to structure their homes, parties, family parties and things, that are more friendly to our son. And it’s… that’s a really good – Autism Speaks is a really good resource. It really helped us.
Ayelet: I’m so glad to hear it. Can you tell us about a few of your other favorite resources, either online resources, or books or organizations?
Leslie: Absolutely. The ones, autismspeaks.org is a great one, but anything by Michelle Garcia-Winner who developed Social Thinking. Because Autism is a social communication disorder. And this helps kids that are on the spectrum learn how to navigate that social world.
The Zones of Regulation is a program that helps kids regulate their behavior. Social Stories by Carol Gray is huge – that one really helped us a lot to help Wes figure out how to act in certain social situations, and then to frontload him – “we’re gonna go to a party now, and it’s gonna be loud!” That website’s great, and it will help you be able to do Social Stories by yourself. They’re not complicated at all.
Ayelet: Can you give us a little bit, just for our listeners who are not aware of what a Social Story is, can you give us a little bit of a synopsis?
Leslie: Sure! A Social Story is basically frontloading someone, let’s say, we’re gonna go out to eat. So, to whatever level your child is, you make a little book. You can just write on it, you can do pictures. “Ok, we’re gonna go out to eat tonight. There’s gonna be a lot of people, there may be noise. They may not have the food that you like. But we’re gonna go out to eat, you’re gonna be able to sit quietly at the table, we’re going to enjoy each other, we’re not going to use a loud voice. If things get too loud, you let Mom or Dad know.”
And then you read it, prior to the activity, several times, so the child knows what to expect. And, you even take that book in and you say, “ok remember, we talked about… it’s loud!” And it’s just a way, I think, of helping them cope. And you can do it for anything – bath time, getting ready for school, getting ready to go to day care, and you can make them as simple as possible, because with pictures, for kids that don’t have a lot of communication.
Ayelet: Sure. And I think it should be said, to be totally honest, a Social Story, or a type of Social Story, is a great thing to use, certainly for a child who is on the Autism Spectrum, but honestly, with any toddler – any child who is developing language and who is not yet able to always use that language. A child with any kind of sensory need, or any kind of need – and a child who is really developing that self-regulation skill… which is any toddler!
Leslie: Oh, yeah! And, you know, we’re really “reading” social stories to ourselves all the time! “Oh hey, I’ve gotta get ready for this podcast, and I can’t get my computer to work, I’m gonna calm myself down…” You know, it’s the same thing as the Zones of Regulation. Those are good for any child! You know, learning how – it basically uses a color system, and you want to be in the “green zone” and these are the tools that I can use to keep myself in the green zone.
We use these tools with all the kids in our clinic. They’ve just been been really valuable for us with our child. And also, using pictures. When he was little, the steps of taking a bath, for instance. We would take pictures of the soap, the shampoo, the towel, the pajamas – all of that. And, I think that’s good for all kids, too! Because if you’ve got a child who has limited ability, then you can structure their world so they’re more aware of what’s gonna happen, so there’s no surprises – kids who have high anxiety, that kind of stuff.
Ayelet: Sure. And we know that visuals are great ways to give ourselves a reminder of what something is or means, and give ourselves the context, and a reminder for the word, right? A word is an auditory experience, it’s a fleeting thing! But if we can provide a visual support for that word, it not only gives us something to visualize and see, but also gives us a reminder for what that is, and gives us a way to communicate, if we want to point to something.
So, yeah, that’s wonderful! So Social Stories by Carol Gray, Michelle Garcia-Winner – all of her things, including Zones of Regulation… anything else that you want to share with us today, Leslie?
Leslie: No, I think that’s it. That gives you a lot to think about, actually. And you know, one thing I wanted to say is that Wes didn’t get his official ASD diagnosis until he was 14. So, if we had waited and not done anything until that time, then we would have been way behind the curve. So, I guess just to say again, don’t worry about the diagnosis piece. Do what you need to do for your child, and it’ll all kind of shake out!
Ayelet: Yeah! Well, thank you so much, Leslie! And thanks to all our participants of the Learn With Less® Curriculum Online Program who are listening live. We’re about to continue the discussion and open up for a Q&A session for you guys in just a minute. For everyone else listening at home or on the go, thanks so much for joining us, and we will see you next time.