Patrice Badami  0:00

Okay, great. Hi, this is Patrice Badami, with Acorn to tree family podcasts. And today I have Lisa galley, who is a qualified speech and language therapist and mum to three grown children who are on to it who are autistic. She now works at an autism family as a as an autism family consultant supporting parents who have or have received or waiting for an autism diagnosis for their child. She’s passionate about bridging the gap that exists between families being placed on the autism pathway, and actual diagnosis. Her role is to provide families with strategies that they can use right now to help their neurotic neurodivergent child thrive. So here we have Lisa say, how are you this morning? Lisa,

Lisa Galley 0:48

I’m great.

Patrice Badami  0:49

Thank you. Lisa has 25 years experience as well. So what’s something you learned that you would like people to understand about children with autism.

Lisa Galley 1:00

And I think what I’d really like is the third debate, a really big shift in perspective, when we think about autistic children and autistic individuals, you know, as well, that I just think that we need to move away at the moment from this, like medical deficit model that we’ve got, where professionals are talking about all the things that children can’t do. And I think for parents, that can be really disheartening, whenever they get a diagnosis, or they read a report that lists you know, all these these things that children finds difficult, I would really love for there to be a shift and for us to start talking about all the strengths that autistic children have got, because they have so many strengths and differences that can really contribute to society, if we kind of shift away from looking at them through this neurotypical lens, which I think is what what we do as a society, and particularly, you know, in the UK professionals have got this deficit model that they use. So that’s my real big passion is for us to just move away from that.

Patrice Badami 2:04

Right, another thing I was on, when I what I’m experiencing on my end is a lot of people come to me, and they use as a as a landing point, I guess, the the movie Rain Man, in that movie, he has, you know, a certain area that he’s a savant concerning counting cards that sir, that’s, that’s not a positive description of children on the autism spectrum, it’s kind of it’s a stereotype that’s not accurate. It’s also it puts them into a category of being, you know, much more different from us then should be it’s not, it’s a negative stereotype. And I want to make sure that people understand that children on the spectrum, they don’t always have this savant quality, they they have a lot of qualities that are, that are similar to children who are typically developing, we just need to find the qualities that they have, where if they have a deficit in certain areas, you just facilitate them, provide them with materials as far as educationally that helps take their abilities and bring them to the forefront.

Lisa Galley 3:14

I also think that we need to be working with Norwich typical children about their view of autistic children, because the emphasis and the expectation is always on the neurodivergent child to change their ways, whether it’s how they socialize, or how they communicate, and actually, how about we work with neurotypical children about how they accommodate and they change their styles to meet autistic children. So that, you know, I think it’s called the double empathy theory, where, actually, let’s look at it from both perspectives, not just putting all that emphasis on autistic change,

Patrice Badami  3:51

right, and what I’m one thing that’s true that I’m happy about is because I reviewed children’s books, I’m finding a lot of books that present children with differences as being, you know, individuals in our in our classroom, that it’s part of a community. They’re not, you know, highlighting the differences in a negative way, what they’re doing, is there appreciating the differences in all children. And that’s the type of empathy that we do need to teach. We need to teach children to have compassion, and to include children who are a little different perhaps. What what is something that a parent with a child with autism really wants their friends to know about? What can’t tell them?

Lisa Galley 4:34

kids, too, it’s quite common for some kids. And it’s alarming for adults. So we can’t, it’s hard for us to watch this, but kids will, especially toddlers will like eat a ton one day, and then eat virtually nothing the next day, this is they’re able to balance out what they need pretty well. And so the less we can kind of interfere with that, and let them listen to their body’s cues and respect their body’s cues that they are going to be and also then you’re just not adding that kind of battle to the mealtime that you just don’t want to get into. And some kids too, tend to kind of front load their meals. So my youngest daughter does did this, especially when she was a little bit younger, she eats a huge breakfast, she eats a lot for lunch, and she eats like a hearty snack after school. And then dinner, she kind of picks she’s just not as hungry. She just doesn’t eat as much at that point in time. So, you know, adults tend to think of dinner as the largest meal, but it’s sometimes is the other way around, right. And

Patrice Badami  5:29

yeah, I was just gonna say what my path has always been with my children. Because I have one child who was born premature, and she has developmental disabilities, and my other son, my son, what I always focused on is I kept the concept of milestones as information, but I focused on where my child was, and what journey they needed to go on. And I validated and I made sure that once I actually, ironically, when I did was I actually edited a book on autism, 10 years before having my child. And I, when I edited that book, a lot of that information stayed with me. So when he started to present the certain pre separations, or behaviors, I was very hyper aware of them. So I think that the main thing is to zero out, you know, take everything away, everything that’s in your environment, what you need to do is focus on your child, don’t worry about all the people around, you focus on your child and say, where are they? What do they need, and then immediately, you know, validate that by getting a classification, getting the early intervention was, I think, life changing. So that’s what I think is really important in the beginning, when you’re when your child when your child has been diagnosed, make sure you do that. But in reference to dealing with family and friends, what I think, again, is I would approach dealing with the extended family and dealing with friends by saying, you know, let’s, we need to adjust the way we’re going to have this play date, for example, and we need to make sure that for him, he’s going to come in, say hello, perhaps at a party, bring his gift, most of the parents were very helpful, they would have his goodie bag already, he would stay for 1015 minutes. And then when I started noticing anxiety coming in, I would adjust and we would leave and go do something else. So don’t be afraid of approaching families and saying we need to adjust the play date this way. In order for him to be able to play say hello, and then we have to go. So don’t be don’t be concerned with telling your friends and having them adjust the play date to meet the needs of your child.

Lisa Galley 7:43

It can be quite hard, though as a parent to to take that step to begin with. And that’s where I feel like friends can kind of reach out a little bit. I’m kind of taking that first step for you because I think you can a lot of the parents I work with find themselves quite isolated and ran into stuck into that vicious cycle of not contacting friends, because I know that I understand it’s a difficult played out and it’s easier not to go and then you know, I think that’s where potentially that it can be really difficult.

Patrice Badami  8:15

Yeah, so it’s from from the other perspective, you know, someone who has a child with autism, be compassionate, be flexible, work it out so that the children can get that social interaction, even if it’s parallel play, and they’re not working, they’re not playing specifically right with each other parallel play is just as great the children feel included. And that’s something you need to be aware of what steps would you advise caregivers of a child who has recently been diagnosed with autism to take to help provide their child with support? What are some things that caregivers of a child with autism may not be prepared for?

Lisa Galley 8:51

I think the first thing I would say is, think about yourself first. So I would find a community of the other parents who are in the same boat as you because I think you need to fill your cup up before you can potentially help your child and if you’re emotionally and physically drained, then that’s difficult. But actually having a community of other parents around you can be really, really useful and really energizing. I think, particularly here in the UK, I don’t think parents are prepared for the fact of how much they have to fight to get the support that they need. And I think that can be so hard for parents who think that once they’ve got that diagnosis, yes, we’ll get the support. We’re actually what they’re finding is that they’ve been handed a leaflet and said bye bye, off you go. And then they’ve they’re not getting the support or they’re on a waiting list for two years for support. So I think if you can prepare yourself for that and that it is going to be a bit of a fight. And then I think yeah, I would definitely definitely that’s my bit of advice would be just be prepared for that.

Patrice Badami  9:52

Right? Yeah, I was gonna say on this and here with my son and my daughter, both who have special needs Um, he did have a diagnosis that I got as I mean, he had his pediatrician years ago, pediatricians seemed, were more forthcoming with saying, hey, check out this neurologist check out that now, it’s a very different world. And they don’t want the liability. Oftentimes your pediatrician, you don’t want to refer any they’ll say you can, you know, if you ask question, they’ll give you a very general answer. And it’s up to the parents, unfortunately, or the caregivers to go out, get those outside independence to further validate. You can also another thing that we did here, I did, so I got a neurologist, who actually her name is Isabel Grafton. And she coined the term on the autism spectrum. She was from Albert Einstein in New York City in the Bronx. And she’s hurt she they still have, you know, a unit there, where they continue on with her legacy. Having said that, she was instrumental in helping to guide and give me information. Another thing that parents can do is get an outside independent educational evaluator, which that that would be a psychologist who provides educational testing, to be able to pinpoint the sip the areas of deficit for your child, so that you’ll go and they usually give you at the end their specific goals for an IEP. Now here, we call them independent, you know, IEP is an independent, independent educational plan. I’m not sure what they call it in England, what do they call it there? Yeah,

Lisa Galley 11:33

I mean, we have our ups, but they’re more school based. what we’ll have is an ehcp, which is educational health care plan, which is where an educational psychologist comes in. And, okay, you have we have like a multidisciplinary team that assessed for this, it’s a legal document that if you can get it before school, then you’re very lucky, because it doesn’t happen very often. But again, here, we have to fight a lot to get any IP or to even get assessed for an HCP. Because, obviously, it’s done via our local education authorities, which is different depending where you are. Again, at the moment, it’s very, parents are starting school without any HCP. So they’re finding, they’re having to fight them to get that support that their child needs in school. So yeah, I think it’s very different here. And, and particularly, with diagnosis, because we have the NHS National Health Service, which is absolutely amazing. Right? Once you’ve got that diagnosis, you get put on a waiting list for either speech, language therapy, occupational therapy, and then you’re you’re basically depending on what area you’re in, you could be waiting two years for that, depending on what area of the UK you’re in. So often parents are now going out of pocket and paying privately for for that sort of therapy, which, you know, is quite different to America, obviously. But always afford that.

Patrice Badami  12:59

I understand, believe me, I understand that more. Yeah, so what I was going to say here is I think you need to check with your insurance. But the first thing would be I think, to get your pediatrician to recommend at least a neurologist they want might not give you a specific neurologist, because they don’t want the viability. But they if you push saying I would like you to give me a prescription to get an evaluated evaluation through a neurologist, a lot of people, it’s better to get that referral, get that prescription, then because insurances require that oftentimes, definitely check with your insurance first. But you get that. And then from there, you can approach the school district and say I want early intervention. And here is what my neurologist says. They don’t know, they don’t often hear. They don’t usually fight if you have a neurologist requesting early intervention, there’s the way they look at it is here early intervention will prevent the need for as much intensive therapy later, it does make a huge difference. So that’s something I wanted to mention also. What is your take on what could trigger a child with autism to have a meltdown? What advice would you give to the caretakers of children with autism to help them to intervene before a child has a meltdown?

Lisa Galley 14:15

It’s I always sort of say to parents that meltdowns can be linked to four things, one of four things or several things if those four things. Normally it’s frustration due to not being able to communicate their needs, their wants, and it’s quite it could be that there’s a surprise transition. So something’s happened. The adults assume that the child is picked up the verbal language and they haven’t so it’s come out of the blue. So they don’t have that predictability, which makes them then anxious. It could be that they’re dysregulated. So that sensory input that they’re completely overstimulated, and that has led into a meltdown. Or for slightly older children. It could be that they’ve been masking all day at school. All and that, you know, lots of children understand that the boundaries are very different at school. And they, because they’re masking all day and keeping it all together, they come home. And as soon as they see their parents or they’ve just come at school gates, we get this kind of explosion, this meltdown where it’s almost like I describe it, like a fizzy bottle a pop that, though, does it, we call it soda. That has been shook up all day. And then out of the school gates, that lid comes off, and you get that meltdown, the urinal in it to one of those four things. So have they got a means of communication? Can they communicate with you? Do they understand what’s happening next? Are they dysregulated? Or have they been holding it together all day at school? So that’s usually what I say to parents, right?

Patrice Badami  15:47

I was gonna say for me, on my end, what I usually start to learn, I mean, it’s really the whole concept is really frightening. But you start to know your child. And you’ll know, for example of my son, he would flap his hands in front of his ears. And I would know, okay, he needs to rest and have a snack. Yeah. So like, if there was some type of a plan that we needed to go do something unless it was something very urgent, like emergency wise, maybe a perhaps a medical situation that we needed to leave and go to, I would change the plans, I would alternate, I would always have a backup plan. So my son always knew we have a backup plan. It’s okay, if I’m upset, so he would know that. So the thing about it is, you’ll start to, you know, as the years go by, you’ll start to know, okay, well, for example, my son, he can’t take crowns for too long, he starts to get headaches. So what you’ll do is you just modify, but I think when you start to see before they start to get full on into the meltdown, you just, you know, relax, and then you say we can change what we’re doing. And you can just adjust. It’s hard, though it’s hard, and it’s upsetting. But you’ll learn, you’ll start to see what is the precursor to a meltdown, and then you’ll start to do you’ll be able to stop it before it progresses. So

Lisa Galley 17:07

something that’s that’s really useful to do after a meltdown is to look at like you’ve just explained, like, what the potential triggers were, what happened? What did you do during them out down, because if we’re using language, when a child’s having meltdown, then we’re just putting in the the level of processing on top of what they’re dealing with. So that can potentially cause the meltdown to be longer. And then they’ve kind of once they meet your calm, offer them a hug, offered, give them a choice. So they’ve got some kind of control over the situation as well. So I think, before and after, can equally be as important as actually what’s happening during them out.

Patrice Badami 17:44

Exactly. And another thing is that when we were having a really great day, I’d say let’s create a special basket, this basket is for when times get difficult, and you feel uncomfortable, you can go to this basket, so he would have things like stretchy tubes, and he would have things like certain stuffed animals, I wouldn’t put electronics in there, though, that was something I didn’t we didn’t want to do. But it was all physical things that he can manipulate with his hands that would distract him and have to create some type of a special basket to keep on hand for your child to help them to, you know, relax a little bit. Okay, what would you advise parents of a child with autism to do if they are concerned about their child’s delayed speech.

Lisa Galley 18:31

And so, I’m a qualified speech and language therapist. So this is kind of where all my training comes from. And I would always say, don’t wait and see. Often, in this country, when when children are seen early, early intervention, we use the wait and see approach. Let’s see if they grow out of it. Let’s see if they develop what actually I don’t agree with that, because you can’t do any harm by introducing strategies now for a child for their speech. So things like visual supports, I would every family I work with, always recommend introducing visual supports early on, so that your child’s got an alternative way of communicating because then we go back to those meltdowns, again, that if they’re frustrated that they can’t get their needs met, then we’re going to it’s going to end up into a meltdown. So things like picture exchange communication system works for some children, even just having a choice board. So some pictures of choices. They can make snacks if you just want to start off small, all these things support language. So we shouldn’t be worried that using pictures is going to stop children from using verbal language because it doesn’t research has shown us that actually, the opposite is true actually supports and enhances language because they’ve got that extra model. AAC devices so low tech, and things like apps that they can download onto iPads. cough drop is a really good one that’s it’s free. And it’s something that you can just do mode a lots of autistic children are absolute whizzes on iPads. And so let’s strength and let’s get them using AAC devices early, you know if they can, if they can navigate them, which they can for lots of things and YouTube, then let’s give them a chance at having a go with with an AAC device. And lots of children gets stuck in this single word trap where they get these single words, but then they’re not actually putting those together to create phrases. So I would say if that’s happening, something to think about is is your child or stopped language processor, because that can be a sign. If they’re stuck on these single words and not developing that they process language in a slightly different way to the typical way that we talk about,

Patrice Badami 20:52

right, I was just going to say concerning visual, or picture schedules, some, something I actually have for my daughter, who’s the one who was premature, what I have for her, is, it makes her feel so happy. It’s I made a schedule, I laminated it, and I bent the end, and I have Velcro. So when it’s when I say they’ll say brush teeth, use toilet has all the list of things she needs to do in the evening. And as she does it, she velcros it closed, and it says Done. Yeah, and she feels so accomplished with this. So you can make schedules just you can print anything out. There’s so many different things online, but you can use it like on there’s a, I use Canva, which is free. It’s a graphic, it’s a graphic design tool, you can create your own customized and pictures, everything, customize your own schedule, then slice it in a way, set it up so that you can make it into strips, and then velcro clothes and Sabbath St John so that they can feel accomplished. Or you can have them you can cut out the different things like the toilet water, wash hands, and cut them so that you attach it to a board with Velcro. One section is where they’re not they didn’t do it yet. And then done inside the board. And it makes them feel so accomplished. I use that when I was working, I also used it as a reward system for tackling so that they would put little pictures of butterflies every time they completed a task that we broke down into pieces. So it’s it’s something that they can physically look at it, they can see at the end, they might get the iPad as a reward. So using visual boards, whether it’s schedules, or whether it’s communication boards, you can separate them into having the morning schedule, the night schedule, so that you pull one out each time they need to refer to it. And it’s very helpful. And you can even make one for when you go out to dinner. So they can select what they want. You don’t have to have the iPad, you can make this on paper and just Velcro, you know, use lamination velcro with that you can do all different ways of making picture schedules, you can put it in a binder, and then just use the sheets, the page protectors, and they can point to it. So you can make all different things. And you don’t have to spend a lot of money, but it’s something that will give them validation, you know, let them know that you know what they need, and that you’re giving them choices, which helps them and that would also prevent some of the meltdowns? Oh, yeah.

Lisa Galley 23:20

That’s very powerful things to have. On my website, startup, lack of visual supports that families do, that’s very helpful. It’s a bumper pad that they can download and print off themselves. And there’s lots of there’s over 300 images in the terrific, but you’ve got a wonderful

Patrice Badami  23:38

thing. It’s really, really wonderful. Okay, so here’s another question. So, again, the is just to reiterate the Gestalt language processing, that means that they’re processing language in a different way. How would you summarize quickly, just so we can clearly understand that?

Lisa Galley 23:55

Yeah, I will summarize it really quick. I could talk for hours on this subject. So there’s still a long process. And so we actually there are two different ways that we process language with our analytic language processes, which is the typical way that we think of children who babble single words, put two words together and they build sentences up. So a single unit of language for them would be a word, like building blocks almost. And then another way that we can learn language is Gestalt language processing. And I think about 85% of autistic children are distinct language processes. Also neurotypical children can be Gestalt language processes as well, and a lady called Marge Blanc. She’s a speech therapist, and she wrote a book called from echolalia to spontaneous language. And it’s a great book if you can get it you can’t get it in the UK but no, you can get it in the US. She talks about how there are these stages of Gestalt language process and she calls them natural language acquisition. The children needs to go through before they can get to the point where they’re using spontaneous language. So the differences that are stored language processor will take a chunk of language that they’ve heard. And they will use that as, as a unit of language, a unit of language. So instead of a word, they’ve got this whole chunk of language, often they’ll take it from YouTube or films. And I remember my my, both my boys were Gestalt language processes. And my son loves Thomas the Tank Engine. So he I remembered there was a phrase that he picked up, which was to to change the points, Thomas. So and that meant that the train was going to move to another track, right? And then later on, when I was talking to him, and he didn’t want to answer my questions, he would say, to to change the change the points Thomas. So obviously, we’re not taking his words literally isn’t talking about cars tank engine. And what he’s using those that phrase to mean is, something has to change. So in the program, we watched the trains were changing tracks, that unit of language actually means I want something to change now. So it’s absolutely fascinating. If you can read more about it, if on my Instagram page has quite a few posts about the language I remember.

Patrice Badami  26:14

Very interesting. My son actually also like Thomas the Train, and he would say, I need to uncouple he would say that when he needed something to change when whatever was happening was not making him happy. He’s I need to which uncoupling means when they take the trains apart. So it was his way of his transition way of telling me I need to stop this. It was almost like his way of expressing I’m starting to get stressed. Yes, that was something. Another thing I wanted to just ask you about just concerning, it might have something to do with that when you have your child if you notice that they’re that they’re talking to themselves. That’s another version of I think, from what I’m hearing and understanding. It’s another form of the Gestalt. In addition to self stimming, which is a way of internally regulating when a child is overstimulated, um, that they’ll often do that, can you speak a little bit about that, about speaking to yourself, and how that has to do with,

Lisa Galley 27:15

I think, the stock language process do still use language for like, you just said that stimming that repetition that. But I think very much in the past, we’ve we’ve viewed echolalia and delayed echolalia, as non communicative. And so we’ve encouraged parents to redirect children or, you know, ignore it. So if a child is using that kind of language, and it feels like it’s a stim, it may be, but it may also be that they are still trying to communicate, but we need to be detectives, and we need to really look hard at what they’re watching on television, what they’re watching on YouTube, what they’re kind of repetitively playing over and over again, and seeing if there are any phrases in that, that they’re picking up on what’s happening at the time, because that can give us a really big clue about what it is they’re trying to communicate. So yeah, completely agree that language can be used to stim. And when children talk to themselves, and there’s that repetition, but also be mindful that that could be them using language for communication purposes as well. And we don’t want to ignore that.

Patrice Badami  28:26

Yeah, no, I hear that because I was able to put together what he was trying to say, when he would say that to me. So we’re going to jump to this question here, which is, what are some questions a parent of a child that autism should consider when choosing a school for their child with autism?

Lisa Galley 28:42

Okay, so obviously, I can only talk about UK schools because I don’t know the US system, but I think it still applies that a big thing I think, is to go with your gut. So to go and have a look at the school, have a look around it. Do you feel that that’s somewhere that you can see your child and you feel comfortable with them being there? I think it’s worth asking about we were talking about the HCP ehcp plan, which you were saying yours is like an IEP. So what the experience to the school have a width that sort of thing with supporting children if they have to apply for funding here in the UK. Have they got experience? Have they got just have they got experience of working with autistic neurodivergent children and you’ll you’ll kind of get a feeling from their responses how experienced they are at that. And it isn’t always the case that smaller is better. And I think here in the UK, we seem to think that small class sizes are better for autistic children but actually some you might find a school that’s got a larger class size but have got more support more teaching assistants, and more experience have special educational needs. And it’s also think about those non academic things as well. So toileting, break time, lunchtime school trips, What kind of support is in place for for those things that are really going to help your child thrive? So those are the questions.

Patrice Badami  30:07

I was gonna say here, I guess the the concept here in New York is we want the least restrictive environment. So here’s the different types. There’s contained classroom, which has children who are allowed, usually could be 11, or lower, there could be six, when my son started out, it was six, then they have like one teacher, Assistant, one teacher and six children, then they break that into groups. So that’s considered contained integrated is when you have a typically developing children in with neurodivergent children so that they can have peer models to aspire to academically and socially, then there’s mainstreaming so that your child would push into a class for mainstream by mainstreaming into their non academic classes, for example, and then they can be pulled out to get support or language and for math and perhaps science. So that is what mainstreaming is here. They can get this when they’re mainstream, it doesn’t mean that they’re just sitting in a classroom with 27 kids or so. And that’s it, they often can have their one on one with them, they can be in a classroom that’s co taught with an additional aid to help them. So you need to see where your comfort level is. And again, get your outside independent ones checking with your insurance to to validate what they recommend a neurologist that recommends specific things for your child because they’ll do their own testing. You can also request from your pediatrician to get once again child psychologist to perform academic testing to get some evaluations, their get their opinion, and then you go into your CSC or committee on Special Education meeting to request certain services based on their recommendations. So yeah, so that’s that’s some recommendations that I would have and some thoughts I would have concerning your child with autism. So once again, Lisa Galli mom of three, she has two children with autism. She’s a speech therapist who had 2025 years experience and she has great resources on her website. Once again, a starter pack. She’s offering this free, it’s wonderful. She can be found on Instagram, where she shares her professional knowledge and personal experiences of parenting autistic children. Her website is Lisa galley.com, where parents can contact you to arrange a consultation. She also is available for personal or staff training. Lisa, thank you so much for joining us today.

Lisa Galley 32:25

Thank you so much, Patrice.

Patrice Badami  32:37

I think that I would love to have you back because there’s so much more we just scratched the surface of how to help children with autism. And I think that what you offered us here information wise is just so important and helpful. The bottom line is there’s resources out there for parents so you don’t need to feel isolated. There’s there’s so many different supports if you reach out, and I’m sure that you should sense if you have any questions send Lisa an email because the contact her she’ll be able to direct you and give you some advice and that’s impartial. And with her personal experience and her passion behind that trying to help you to facilitate your child with autism. So thanks again, Lisa galley. This is a court to tree family Podcast. I’m so glad you listened in and we look forward to meeting with Lisa one more time or so in the future because so many more things she can share with us. So once again, thank you so much for joining us today. Thank you