FraserCast Episode 01 Transcript - What is Autism?

 

Services and resources mentioned in this episode:

• Fraser Autism Center of Excellence
• Fraser Career Planning and Employment

 

Transcription:

 

[00:00] Music Playing

 

[00:12] 
Dave Fettig: Welcome to FraserCast, a place where we discuss all things autism, mental health, and special needs. I'm your host, Dave Fettig.

 

[00:20] 
DF: Before we begin, I would like to thank our sponsor for this episode, Geritom Medical. Geritom has a strong commitment to support Fraser programs. Geritom's close and rewarding partnership with Fraser helps the amazing residents and staff that live and work at Fraser.

 

Geritom's focus is to serve in the Twin Cities community not solely as a pharmacy provider, but also as a strategic resource and partner. Thank you Geritom for your continued support of Fraser and the families we serve.

 

[00:48] 
DF: With us today is Rachel Gardner, director, Fraser Autism Center of Excellence. Rachel has more than twenty years of experience with serving Fraser families with autism. In 2004, she was recognized with the Carol Gray Award, a national honor for making an outstanding contribution to the lives of children with autism.

 

Rachel is a certified provider of Early Start Denver Model and has expertise in areas of parent guidance, diagnostic evaluation, and outpatient therapy. For today's show, we're going to focus on the basics of autism and what questions parents might have. So let's begin at the beginning.

 

Rachel Gardner: Okay.

 

DF: What is autism spectrum disorder?

 

[01:21]
RG: Well, it's a hard definition because it is such a range, so it's–at the base of the definition–it's a neurodevelopmental disorder which is characterized mostly by social communication, needs, and social needs, and repetitive play and interests.

 

[01:42]
DF: So, that is a broad description. Before we go further, can you give us some examples so we can understand it better?

 

[01:50]
RG: Yeah, I sure can. What people often talk about is if you've met one child with autism, you've met one child with autism 'cause it's such a huge range, so some of the characteristics that we look for are individuals who have difficulties initiating and maintaining age-appropriate friendships. Individuals have a hard time communicating their wants, their needs, their emotions. [They] have a more challenging, difficult time with self-regulation, so keeping themselves calm when upset or frustrated with something.

 

Often times, our kids or adults on the spectrum will have intense interest of either play objects–in particular, some sort of toy when they're younger–all the way up to topics; they might be really interested in certain topics; know a lot about that topic, and don't always know how to use [that] appropriately in social situations.

 

DF: These sound like almost like borderline examples for all types of human behavior.

 

RG: Mmhm.

 

DF: It must be challenging to diagnose.

 

[02:47]
RG: Yep, it is. It can be very tricky, so that is exactly correct that if you look at these behaviors anywhere along development, they're typical at some point. It's really–we look at when those behaviors go outside the typical expected age range, so for example.

 

One kind of the red flags–not every child with autism has this, but one of the red flags might be hand flapping; repetitive hand flapping. Very young kids do that; that's part of what they do.They get excited. But when they are five, six, seven, they stop doing that and when it's present at five, six, or seven for our kids, that's when it starts to be a concern.

 

So, looking to see when those behaviors happen outside of the typical expected age range or [asking], "do those behaviors have more intensity than we might expect? Do they last longer than we might expect?" We need to really have a good understanding child development, human development in general and looking to see, "is it typical within that expected age range, or is the quality different or outside of what we'd expect?"

 

[03:48]
DF: So you've begun to address this, but I'm gonna take the point of view as I indicated earlier of a parent and, so, give me some early signs of autism in a child and maybe talk about how that might show itself over the course of a child's young life.

 

[04:05]
RG: Sure. So as I say, it's an important caveat to say, "not one of the red flags is indicative of autism itself." We have to see a whole constellation of some of them.

 

So, a couple of the red flags that we typically see is lack of eye contact or lack of reciprocity, so. For very young babies, we've all had that experience I think with a young baby as a parent, you can get your baby to laugh at you, smile at you, and you smile back at them without saying anything. A lot of times, our parents talk about how much work it is on their end to try to get their child to connect with them. So it's that back and forth reciprocity that we often see missing.

 

We also often talk about lack of response to names, so parents often say they were afraid their child was deaf first, and that's what got them to seek intervention or assessment; first was looking at their hearing. But it's really selective, so they don't respond to names–that social cue, but they might respond to a piece of candy being opened up in a room next door. So it's not about the hearing, it's more about that social connectedness.

 

[05:07]
RG: Also, we talk about joint attention. It's a really big word, but it's really important looking at potential for autism. So that means... lack of pointing, a lack of following a point. So if you think about a young child who might see an airplane, they get excited about that airplane. They're gonna point to that airplane, they're gonna say, "look," and try to get you–as a parent, or as a caregiver, or grandparent–to look at that airplane too and be as excited about it as they are. So they point, they look at you, they point back until they know you have seen it and are [as] excited as they are. Our kids [with autism] often times don't point or look at things that same way and/or follow a point with directions.

 

Other times, people talk about just regulation–like I mentioned, is a bigger word–but that really just talks about the ability to be soothed as a baby, so you know. As a really young kid, a baby cries, a parent picks them up and typically they're soothed when that familiar caregiver is able to give them that comfort. A lot of times, our kids [with autism] are not, so they remain upset. They have a hard time calming. Sleep difficulties is very big, very common for our kids as well, so.

 

[06:12]
RG: Again. Not one of those is indicative of autism by any means, but it is as you start to see the whole constellation.

 

DF: So let's drill down a little more. You talked about babies. It's fascinating to think about, that you could actually detect certain things. If you could, maybe... you know, put hard dates or times. I mean, you can't–every individual's different, but just to give a sense along the path of a childhood; how different things might arise.

 

[06:43]
RG: Yeah. I mean, as you mentioned, that range of what's that typical development is huge for babies, so it's really quite hard to pinpoint that, but you know. Three months, six months, we're starting to see the eye contact and the giggling and that reciprocity for sure. And if that's missing, that's pretty key by that point. I would say most parents are recognizing that, by six months, there's something a little bit different if they're not able to connect with their child in that way.

 

By eighteen months, even twelve months–by eighteen months for sure, we're able to make a pretty predictable and stable diagnosis of autism.

 

[07:21]
DF: So for parents who are concerned or have questions, what do you recommend for parents and at what times should they reach out to an institution like Fraser?

 

[07:32]
RG: I think as soon as you have concerns. We always tell parents, as parents [ourselves] too, we have to follow our guts and we tell parents–I hear so many stories from parents that they knew early on; they knew something was different. And I would say definitely reach out to pediatricians and talk with them. That would be the first point of contact.

 

Pediatricians, there's a lot of effort doing some education about, "what are these first signs," for pediatricians as well so that they know when to refer around for additional assessments, but I think it's never too early.

 

We see very young babies and especially if they're siblings; we have kids who already have a diagnosis; we're able to watch and track development along the way. And if we're able to intervene when they're really young and tweak some of those moments that parents have with their kids anyway, and play, and in those moments of kind of quietness, we're able to actually make some big changes, so I would not wait. I would definitely seek out intervention or seek out support as soon as possible.

 

[08:34]
DF: You mentioned siblings and we've talked about parents. Just as a reminder that autism is not just about the child who's diagnosed, but it's about the whole family.

 

RG: Absolutely.

 

DF: Can you talk to us about how a diagnosis like this can impact a family and what it means for the family going forward?

 

[08:51]
RG: Yep. So I think one thing that kind of loops in your last comment, too, is we've been doing a lot of screenings for families who already have a child on the spectrum and we'll screen the siblings, and it's striking. We often get more elevated scores or concerns from families who already have a child with autism on the sibling, that when we reach out to connect with that family to start intervention, less than half of them are actually ready to start that intervention with the second child because I think it's just... The process is exhausting and it's emotionally exhausting and it's hard to think about going through that again.

 

So there's a couple different things about siblings. If you have another sibling on the spectrum, that's one path, but if you have typical developing children, siblings is a different path. We do see that. It definitely is a whole family need and those needs might change.

 

I was just talking to a group of parents last week. When we look at what type of intervention package we need for that particular child, it changes over time, and even at points, it may not be that child who has autism–who's our primary focus of intervention. It might be the parents. Maybe the child's doing okay, but now it's the parents' time to make sure they're getting their needs met, or maybe it's now the sibling's turn whose needs are not getting met and need to have some intervention, so we need to look holistically and not just at the nuclear family, but also grandparents; [they] also play a big role, and we also talk with many of them as well. We really try to approach whoever is giving care to that child and how we can help support and explain [and] educate, and then give some basic strategies to use.

 

That's fascinating to think that this is, as you described, a holistic approach to this diagnosis for the whole family. That's wonderful to know. So, in terms of range of needs and–now you've described the inter-relationships among other members of the family–what types of... what might those needs look like? What can happen in a family? What would a schedule look like–what would a life look like for a family? How does it play out?

 

[10:29]
RG: It can be very busy, so we try to tell families at the very beginning when they come through, the first step is always a good assessment. So we start with an assessment, we do a bunch of testing with a child so we know what their needs are. When we are giving our feedback and talking about recommendations for treatment, the positive thing is we have a lot to offer now. I've been doing this for twenty-three years; the amount of services we have now doesn't even compare to what we–you know, it's just huge compared to what we used to have.

 

So, good and bad, we have to try to help the families outline and prioritize where to start. We always tell parents, "do not start with everything." You're gonna burn yourself out, burn the child out. So, really helping them look at what are the needs right now, and then how those might change and just be upfront about that; that we have a package now, but it may change over time.

 

What we typically see, though, is we would have–a lot of our kids are in school programming; the schools are doing a fantastic job of looking at the needs and education setting. So we try to make sure parents are connected with the community partners, and school being a huge driver there. Medical needs; so making sure they have a pediatrician who understands autism and can [be willing to] coordinate or collaborate as needed.

 

And then there's a whole range of other mental health-type services that may be needed, so some kids need full day programming and they might go to school [for] half days; a place like Fraser [for] half day. Or they might have even higher needs and come to just Fraser for a full day. It's just important to know that there is a package and it's important to have the parents be the drivers of that package, but they [also] have guides behind them explaining what those needs are right now and how can we help meet those, and we have to look at those every three [to] six months to make sure that they're making change, we're hitting the right targets, and it's appropriate.

 

[12:46]
DF: You mentioned schools. To what degree are schools able to help be a part of this and in working with Fraser and working with others to help children?

 

[12:57]
RG: Yeah. Schools great collaborators and there's a whole range of services that they can also provide. The way their systems are currently–in our country–is that we have to have two assessments. A medical evaluation–such as [one] done by [a] psychologist–provides a medical evaluation, which opens up services like therapies, like day treatments, like ABA (applied behavioral analysis).

 

Schools have to do a different assessment. We use each other's information as much as we can, but schools do an assessment to really look at what type of supports do they need to be successful in their education setting. So that could look [like] a number of different ways for kids, but they get a document called an Individualized Education Plan (IEP) which has all of their different resources in that plan, and it could be from more kind of self-contained classrooms for only kids with autism or similar needs to kids who are in a typical mainstream classroom and maybe have a person sitting with them to help support them, and/or maybe completely independent with a teacher having some particular strategies that she or he may use throughout the day. Often times, kids can get occupational therapy, speech therapy through the school as well as private [providers] too, so we tell parents to try access as much as possible in a planful manner, but the school systems are really well-equipped and doing a great job.

 

[14:15]
DF: From a purely emotional state for a parent, I would imagine there would be a high level of anxiety or stress or worry about their child in a school. In your experience–you've just addressed this in a sort of technical way–but just broadly speaking, kids are feeling okay in schools, parents are feeling good having their kids in schools. It must be at the top of their stress list for parents.

 

[14:40]
RG: Yeah, absolutely. As a provider, I think we often hear the stories of when it's not going well, but I think that there's a vast majority of kids [who] are doing well and parents are supportive of school districts. I think it is, for all of us, for all of our kids, you want your kids to be successful in school and having special needs on top of that can make anybody feel anxious and, you know. Of course they are concerned about bullying, which I know is top of [their] mind for everybody and just making sure that teachers are able to really access that child's strengths; our kids have incredible strengths and if we can tap those, we're able to see some really amazing results.

 

We just try to say it's so individualized. It's about that match between teacher and the child. [We] really try to help the parents feel equipped to go in and talk with the teachers about their child and what their needs are, what their strengths are, and how to really promote that social setting for them.

 

[15:39]
DF: So let's talk a little more about the feelings, the psychology of the parent in this case because I think that's important. If I'm a parent and I have a child that appears to be on the spectrum–not too bad–he or she is getting along. I might be tempted to say, "okay, I'm not gonna do anything. I don't want my child labelled and I think we can do this on our own." What would you say to a parent like that?

 

[16:00]
RG: That's always a tricky question and I–because I think it changes over time, so if you think about a very young child with the social demands for a very young child, it's easy for us as parents to manage that and try to support that. When we get older, though, those social demands get really high and much more abstract and much more challenging for someone to navigate.

 

So it's not uncommon for us to see kids who are [age] fifteen, sixteen, seventeen for the first time getting an assessment and actually, we see quite [a few] adults now coming through [for] an assessment.

 

And as we become more aware of autism, I think it's been fantastic to get people thinking about, "maybe there's an explanation for why I struggle so much with social interactions," and those other things we've talked about. I think it's important just to have the information and we can certainly talk about, as a team with the family and a provider, what do you do with this information? Sometimes, parents have–they have choices. They may choose to not give it to anybody. So we talk about that. We make a plan. If their child's doing okay in school, do you have to seek out the school? Maybe not. Maybe you have that information from the medical side that you can use as a basis going forward, and if there's concerns in the future, you have that information. And then, you can use it. And sometimes, it's most appropriate to talk about it with everybody right away.

 

It's very individualized, but I think it's helpful to at least have it. Just talking to parents, I think that the unknown is more anxiety-provoking than having the known. And then again, talking about it with a provider to make a plan.

 

[17:34]
DF: Thank you. Parents might feel guilty–parents have a lot of reasons to feel guilty about their children and this would be another example. And one of the questions they might ask themselves is, "did I do something? Is it me? Is it genetics?" Let's circle back to the foundations of autism and describe for us what we know about where it comes from.

 

[17:57]
RG: We don't know a whole lot about that. That is a huge question. Over time, I feel like we've come to believe that it's probably–it has multiple ideologies. It's not just one. There's a lot of studies happening right now looking at the genetics behind autism and we do know there are a number of genes that are associated with autism, not just a couple, but a number.

 

And there are great studies at the University of Minnesota right now along with nationwide studies looking at what might be underneath, what might be underlying, and they are finding a number of genetic chromosome disorders quite rare that also mimic autism or look like autism. That's a newer trend. Years ago, we did not see people do genetic testing or chromosome testing like the way they are now, so. We–I think, years ago–thought it was maybe more of a single ideology, but right now, we just... we think it's hundreds. That these symptoms tend to mimic each other, and that's what we call autism. We do know that there is some genetic component for sure, but not for everybody. There is a lot of ways to get the additional testing now to get some answers.

 

[19:12]
DF: This gets to a question that's sort of out there all the time, things like this, which is... do we have more autism now for some x-factor? Or do we have more autism now–if we do–because we're better at diagnosing it–we're smarter about it?

 

[19:25]
RG: I think it's... again, we don't know a hundred percent, but I do [know that] the majority of it is that we're much better at diagnosing it; we're much better at getting kids in early enough for us to look at [them] across [the] age span. We're also seeing, as I said before, more adults coming to [us]. As more awareness happens, we have more people coming, seeking out assessments. We are better training educators and psychologists and medical providers, [teaching] what are those signs of autism, looking at getting accurate diagnoses.

 

There's also a whole range of individuals that the symptoms are quite mild and subtle, and you really need to have a well-trained eye to know what you're looking for, and that's the group I think in particular we're catching more than we did years ago.

 

[20:08]
DF: So Rachel, you mentioned adults coming in, or recognizing that they might have needs. If I'm a parent and I've got my kid in Fraser, I'm worried about today, tomorrow, next week, and next year, but at some point I'm worried about... what about my child's future when I'm not around? How can you address my fears in that regard?

 

[20:27]
RG: Again, throughout the years, we have learned so much more about what supports that individuals on the spectrum need as adults and we're providing many more services for them both at Fraser and just–we're talking much more at the national level, which is exciting to see. So there's–really–at about age fourteen, we talk about transition planning. The schools are able to do a lot of that transition planning where kids can actually stay through [age] twenty-one in Minnesota. So they're looking at more... kind of functional skills and making sure that people have more independent living abilities when they leave.

 

There's also a range of different options as far as guardianship that–different levels of guardianship–this is outside of my scope to talk about fully, but there are a lot of legal experts and great advocacy groups that do a lot of training for families so that they understand their rights as parents and how can they help have some of that guardianship at some level or conservator-ship and help that individual make decisions.

 

But I just have to say, there are so many stories of individuals on the spectrum living very productive lives and we're all learning–I think–that individuals on the spectrum have a lot to give to society. We have to figure out and tap into what are their individual skillsets and strengths, and if we can do that–often they're excellent employees. They are very skilled in particular areas and if we can help them identify that and find the right match for them, they can often do very, very well. A concern is, often times individuals are under-employed, so there's a lot of focus happening with career, employment, and jobs right now.

 

[22:16]
DF: Great. Are there any questions that you'd like to address that I may have missed?

 

RG: Hmm...

 

[22:25]
DF: And while you're thinking, I'm going to... address one particular word, which I'm not a big fan of which is "disorder" in autism spectrum disorder.

 

Yeah.

 

Autism spectrum living sounds better to me.

 

[22:41]
RG: Yeah. I hear that. I think it's very much a probably outdated medical term that we've used for years. How we use it and what it means to us in our field is looking at kind of those strengths and areas of needs that our kids have and that they have very high skill areas, and then they have some needs that are maybe... below peers. Those peaks and valleys is kind of how we think about that, but yeah. I agree with you.

 

[23:14]
DF: We know, because we all know people–most of us do–who are on the spectrum and who succeed very well and have tremendous skills. Can you please describe how children who grow up to be adults diagnosed with autism come to embrace their skills and maybe give us some success stories?

 

[23:36]
RG: Sure. There's a whole movement right now talking about neurodiversity and that, if you look at any of what we perceive as a challenge in autism or any other diagnoses, you can flip that to look at being a strength as well and... I'm so excited that this movement is happening because it really shouldn't be seen as a limit, but it should be seen as, "how should we embrace that?" To really help them succeed.

 

So there's a lot of information coming out now about neurodiversity and as I sit in some conferences with a lot of individuals on the spectrum, I can see that there's this... ownership and energy around it and embracing that diagnosis–and again, it's not a limitation, but it defines who they are in a very positive way.

 

I can think of a number of individuals who I've had the chance of–have the pleasure and opportunity of working with over the years, since I've been here for many years. And now, as young kids, they came in with a range of needs as well as a lot of strengths, but now I can think of one who is... working at a college and in charge of the social program at the dorm. That's just incredible to me that the cornerstone of autism is social challenges, yet now in charge of the social curriculum or social whatever-it-might-be program at the dormitory, so... We hear those stories all the time and I guess it's just really important for us to remember: we can never put limitations on where we think these individuals might go. We can think of kids who need a lot of support when they're young. Had I maybe forecasted their future, I would have been totally wrong to where they are now, so I've just learned we have to, again, embrace those differences as abilities and how we can help shift that and guide them in a way that will make them successful.

 

[25:31]
DF: What a positive message to end our podcast on. Thank you, Rachel, so much! It's been a pleasure talking with you.

 

RG: Yeah, thank you!

 

[25:41]
DF: Thank you for listening to FraserCast, a place where we discuss all things autism, mental health, and special needs. For more information, visit us at www.fraser.org. That's F-R-A-S-E-R dot org.

 

And once again, we'd like to thank our sponsor, Geritom Medical, a valued supporter of Fraser.