The autism landscape in Central Pennsylvania

Autism panel gathers at Central Penn Parent to talk diagnosis, treatment, management and challenges. Photos by Amy Spangler

Recently, Central Penn Parent brought together leaders in the field of autism support services — from a researcher and medical care provider to therapy providers, educators and a family law attorney — for an insightful conversation addressing a wide range of issues affecting those with Autism Spectrum Disorder (ASD). We shared highlights in the April edition of Central Penn Parent, but space constraints of the print publication prevented us from running the complete discussion. We’ve posted it here in its entirety.

The discussion participants:

Alicia Burger, director, behavioral services, the Vista Foundation
Keith Imboden, program supervisor, support services, Capital Area IU (IU15)
Quintina (Tina) Laudermilch, partner, Daley Zucker, Meilton & Minor, LLC.
Dr. Michael Murray, child psychologist and director, Division of Autism Services, Penn State Health Milton S. Hershey Medical Center; director, central region, ASERT (Autism Service Education Training)
Angie Rice, director of therapy services, Schreiber Pediatric Rehab Center of Lancaster County
Shaun McCoach, associate publisher, Central Penn Parent
Leslie Penkunas, editor, Central Penn Parent

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Leslie Penkunas:  There has been some talk lately of early diagnosis of autism. How young are children getting diagnosed now? And how is that diagnosis possible?

Michael Murray: The latest figures that I’ve seen have the national average of age of diagnosis at about 2 ½. Every time they do this work it is getting better, improving in six months to a year increments. Diagnosis is made by typically concerns being raised about variations from typically developing patterns, missing speech milestones, having difficulty engaging in social interactions with family members, with other kids, with the world at large, and also the emergence of challenging behaviors or abhorrent behaviors interacting with the environment in unusual ways. Certainly the goal is to get the diagnosis as early as possible because identifying kids at risk or the kids who have full-blown symptoms, you can get them into the right kinds of services delivered at the right levels of intensity. There’s really solid research that suggests you change the trajectory of development for that person. Really, the goal is to identify kids under a year of age, get them into the services and really, really impact those outcomes. That’s where the field has challenged themselves to get the diagnosis under a year but we’re not there yet.

Penkunas: What responsibility do primary care physicians — pediatricians and family doctors — have in screening infants or toddlers?

Alicia Burger: Speaking just from experience as a parent with each of my children when I took them for wellness visits at young ages, I had to complete a questionnaire which is essentially just asking questions about social development, milestones you would see in a neuro-typically developing child, and it’s very much just a yes-or-no did you observe anything surface level assessment.

Penkunas: How old are your children?

Burger: 3, 5 and 8.

Penkunas: I never had that. My children are 12 and 15, and we never had those questionnaires.

Burger: I think it’s lovely that they’re trying to make a movement towards that and having some type of assessment. I don’t think it’s necessarily the most beneficial. I do think that it catches some red flags. Speaking with some of our families whether they’re families that we’re screening or some of our older students where they might have siblings who may have been neuro-typically developing, we have some stories from families who said, well I said to the pediatrician there’s just something not right and they were received and it’s to no fault of the pediatrician, it’s not where their area of training is, but the parents were told ‘It’s ok. They’ll get there. They’ll develop.’ So I do think as a community, as individuals have the knowledge of autism, I do think we can all do a better job of helping to educate those that it might not be part of their job training or expertise and really helping to educate them on what might be part of an effective assessment when you do identify those red flags, how do you help to educate those families of the routes that they should take? Because that’s another thing. They may receive the diagnosis but it’s not easily accessible information. Well, now what? And that’s where we could do better.

(l to r) Alicia Burger, Michael Murray and Angie Rice

Keith Imboden: I was going to add to Dr. Murray’s note about early intervention treatment being invaluable and leading to success later. While I supervise school-age programs, we do early intervention programs and I know the students that identify with autism who are participating in those programs come to us at school age. In most cases we’re trying to teach students how to be a learner. Just coming to a class being able to sit with an adult, being able to do a task that normally they wouldn’t be able to do and that is extremely valuable. When they do come to school, we see a big difference between those who have that early supportive service and those that don’t, just how much further along they are, even being able to participate in a classroom setting.

Penkunas: [to Angie Rice] Are you finding that your patients are coming to you younger than ever, and experiencing better outcomes?

Angie Rice: Because we contract with so many different agencies, we contract with early interventions, which is the behavior health and developmental service, birth to 3, there have a lot of programs out there I know like ages and stages where and even some of the libraries where I’m involved they’ll have playgroups and they’ll have me come and I’ll just interact with the parents and take a look at the kids playing and we also with the daycares because the research is so strong with early detection so that we can go ahead and get OT, PT, speech implemented and started right away which obviously makes changes down the road that I think a lot of community settings are stepping up. Autism is a lot of hard work for parents so I think pediatricians are careful. It’s all the rage out there, it’s all you hear about. It makes a parent very nervous. So they use a checklist, but they’re still being very sensitive to parents. We’re doing it more through play and groups and simple ages and stages when parents can come and say, ‘Hey, I’m not sure this is right can you just come and talk to us a little about that?’ And so we’re there more as a support too and getting out there.

Penkunas: So, are parents more or less hesitant to try to get a diagnosis? Are they more wary, or less so, now?

Rice: I definitely see both ends of that. You’ll have the millennium parents who see this out there and they want everything. ‘If you to give me the diagnosis, that will give me more services, then go ahead. I’ll do anything and everything I need to do to.’ Then you have the other parents who sees it as a very scary diagnosis, so ‘Don’t give me that yet until we’ve ruled out everything else.’ With us, kids will come in and the parents will think it’s an autism diagnosis but we have to be really careful because sensory processing disorder is another disorder that’s very similar, but there’s different treatment approaches to both.

Murray: That’s the time when you’d really want to make sure you’re doing a thorough assessment of their social development. That’s kind of where it differentiates on sensory integration dysfunction or pragmatic speech and challenges with speech development vs autism where you can have those features but really what distinguishes it is the challenges with social reciprocity, being able to respond to other people in a social environment, being interested in other people.

Just as Angie was saying, I see also a wide range of reaction, just like there’s a wide range of families. This has different meaning to different people and overall though, I think because there is much more in the public awareness and organizations that have promoted autism awareness and really moving into autism acceptance that we really are trying to change the message that folks have challenges but in a neurodiverse world we can all have a place and seeing people thrive and succeed has changed the conversations.

Penkunas: What are some of the new therapies being used with kids with ASD?

Rice: You at the Vista School use more the ABA approach. There’s a bunch of different approaches out there which I think is great in one way and a challenge in another to find the right fit for every child. I know down at Schreiber one of the new ways that parents are looking for is the use of technology on the iPads which I’m constantly getting calls for. You hear now a lot about the programs Proloquo2go which will speak for you if you can train the child to access it. One of the big things we hear is, ‘I really want to know what my child is thinking. I really wish they could talk to me,’ and that’s the challenge for some kids with autism and we’re really taking a look at some of the advances of assisted tech out there just to help, to help hear that child say, ‘Hi Mom,’ or ‘I want a drink,’ cause that also eliminates some of the temper tantrums that might happen.  Parents just want to be a family. They want to do family-oriented stuff. They want to go to an amusement park and you have to find those measures that let them do that.

Burger: Sure. You’re right. We are ABA-based. [Editor’s note: ABA is Applied Behavior Analysis, which focuses on techniques that increase positive behaviors and reduce those that may cause harm or interfere with learning.] We often times might hear of a family wanting to try a different type of therapy and really, for every family, they need to determine that which fits their value set and their preferences in terms of their treatment. I’m a fan of ABA, but it’s not for everybody so really what do is we try to help and educate the family—if you are going to try different therapies, this is how you can be an informed consumer. There are things that you might want to consider. We also say, you should apply the scientific method. What am I looking to change, what does it look like now, what is the intervention, and what does it look like after I do that? And if it changes, and you agree with the methodology, then it might be the right treatment for you and your child. Because you have to believe it to really put forth the effort to implement it.

Rice: You have to practice it.

Burger: Exactly. It becomes part of your life. So you really have to agree with it. I don’t think anyone should really tout their therapy as that which is good for everybody because it does go back to your value set. I would use this with my children because I agree with it. It’s who I am.

Rice: I think finding the correct sensory diet is huge. That’s used across the board — at school, at home — to help a child, to find the best technique, whether it’s deep pressure, or finding a fidget toy to keep your fingers busy, or to help increase their attention span or focus to help them be a part of something. Sensory is very big right now. It seems to be a big success with all of the research that is out there right now.

Imboden: While I’m speaking from an educational perspective, there’s just so much crossover here between all of the things that we do, particularly in the area of autism. You can’t just teach a student without understanding the occupational therapist perspective and without understanding the speech perspective and the mental health treatment and the doctors. There are so many factors that go into that child’s development in more than any other field that I’m involved with. There is such collaboration needed to move forward with students. We do move forward in our classrooms — we follow an ABA approach as well. We’ve found that to be generally the most effective approach to getting students from here to here. Lots of positive reinforcement. Getting students to want to be over here as opposed to here because that’s rewarding to them but we can’t do that without an occupational therapist saying ‘He’s going to need some occasional sensory input in order to stabilize and maintain, otherwise we may lose him’ and if we don’t understand that we’re going to bang our heads against the wall. This collaboration is really critical for us.

Burger: In regards to technology, there is a lot more technology at our finger tips, and it’s very preferred for a lot of individuals. Everyone has their technology here today. There’s a lot of really great programs that are available for teachers, in particular, to help develop skills. And you have someone who’s already motivated to look and use a computer and here’s my instruction that’s already imbedded in this computer program that’s going to provide the reinforcement and feedback that the individual needs help to teach and an error is made. How do I adapt this instruction? A lot of great technological resources, even for communication, if that’s the modality that’s most effective for an individual. Yes there’s teaching involved with it, but just a lot of great, great resources that are opening up a lot of avenues for individuals.

Alicia Burger of the Vista Foundation

Rice: I think that’s why it’s really important, again, just to seek out services right away. The other piece to autism is that it’s such a wide umbrella. You can have such a high functioning child with autism and then you can have the other end of the umbrella where there are more challenges. That’s where you can meet with professionals and try to decide what programs are best because that child with high functioning autism might just need to work on really simple social skills to learn to be able to meet and greet friends or participate in a recreational group so they might not need that real intense program where you might have a child who has a little bit more challenges and we might need to look at what would be best if we followed this routine and we tried this program to get this success. That’s my big thing with parents: try to find that help right away so we can get you on the right track. It’s so important.

Murray: I think also one of the things that can be challenging is understanding that the sets of needs change over time so that what someone needs when they are 3 is not what they need when they are 13 is not what they need when they’re 18 and constantly we are revisiting that and determining what is the right intervention for this set of needs at this time. And understanding too that the misnomer that — we all use the term high functioning and I wish we had never adopted that, because I think that it discounts the struggle that a lot of people who have great cognitive skills have great communication skills but discounts how much they really struggle in making a path for themselves and as we get older so much of our world is dependent on how well you communicate and how socially engaged you are with other people. Those are the two things that people with ASD really struggle with so you’re going on and you hear, ‘Oh, you’re really smart! Why aren’t you getting this? Why isn’t this happening for you?’ And really, it’s just not understanding how devastating these deficits can be for folks.

Penkunas: We know that routine and continuity of care are crucial for children with ASD. What about when parents are sharing custody? Tina—can you address those special considerations you might face in your family law practice?

Tina Laudermilch: A lot of times I deal with situations where you have a child with ASD. It could just be one child with ASD, or you could have other children in the house. We look at 16 different factors with custody. We have to realize that with ASD there are certain transitions that could potentially be a big cause of concern so we’re looking at schedules that are maybe going to minimize those transitions. We’re also looking at different parenting styles. Now that you’re in separate households you have different parenting styles. So a lot of that also. I know sometimes that as an attorney, we’re trying to get the best situation for this family going through a difficult time to begin with, and then you’re throwing in some additional factors that you have to think about so I know for me sometimes we’ll struggle with parents who want to be equally involved and want that hands-on on an equal basis but trying to get whether it’s my client or the other parent, recognizing that ok, well, we understand what you want but that’s not what’s best for your child because doing a schedule where you’re 2 days with mom 2 days with dad 3 days with mom 3 days with dad may not be the best fit, especially for a child with ASD. Discipline, parenting, trying to manage those co-parenting aspects. You folks probably see that too on the other side on the therapy and treatment side. Whereas I’m trying to juggle it on the legal side. I know there’s not a one-size fits all arrangement, but is there any things to consider other than what I might see as the obvious? Like schedule challenges and discipline.

Imboden: From a school perspective, our most successful students who have autism who are in a situation like that is when there’s some continuity in schedules and support. We see the opposite a little more than we’d like. Just because somebody is visiting so and so on the weekend, Monday is a really, really bad day. Some of that is just a change of routine, some of that is the very different styles of parenting, as you mention. Some of it is depending on if a parent ascribes to a philosophy or not. We do have some parents who may be more in denial as to what their child’s disability is and they may have an approach that is more consequence-based, more punish-based and that can have a child take a few steps back from what we’ve been working on otherwise. We have seen many successes — it’s not all bad. Mainly when we’ve been able to convince parents to follow a similar approach to parenting.

Photo/Amy Spangler

Keith Imboden, with Shaun McCoach looking on.

Laudermilch: It can be difficult and I have had many situations myself where maybe the parents weren’t on the same page about what was going on with the child or maybe they both recognized that there’s reason to be concerned but they’re not at the same place at where they’re seeing things heading. But I do know that it can become a challenge from the perspective of trying to come up. And then if you’re in a situation where you’re in court and in front of a judge trying to also educate the court and the judge about why—look, we’re not trying to keep this child from one parent or another or he has these unique needs or yes this might be a time to think about a different schedule for this child vs the other children. The court doesn’t usually like to separate children in a family; they like to keep them all on the same schedule. But maybe there’s a good reason why and educating the court about why that is and a lot of times to most folk’s chagrin we’ll be calling therapists and asking them to come and testify.

Rice: We grin! [Laughter]

Laudermilch: Would you mind testifying in court for me? [More laughter]

Shaun McCoach: When you have that situation where it can be contentious and mom has an idea and dad has an idea, do you see a child going from one type of treatment to another and how that can be unproductive? And do they listen when you say, this probably isn’t the best idea, even when you’re kind of playing the middle ground there?

Laudermilch: Sometimes they listen to me. I recognize that there are different perspectives. Even though I have my client, I recognize that the other party is going to have another perspective and it’s sometimes very difficult to distinguish what is the most accurate perception of what’s going on. I have no problem, as long as the client’s ok with it, picking up the phone and calling the pediatrician, picking up the phone and calling the doctor, the psychiatrist, whoever’s willing to talk to me. To try to educate myself about what’s going on with the child or the children. There have been times where we have gone into court and I’ve said this is such a bad situation that we need to have one parent have the ability to make medical and psychological decisions for the child over the other parent. Typically speaking, that’s not the first place a court will go, but I have been in that situation where we’ve had to do that because what is going on in that environment between two households, the child is [regressing] – they were making strides up until this point, but now there’s a backslide because of what’s going on.

Penkunas: And have you all seen this happening?

[All say yes]

Murray: It can even be dangerous because sometimes we’re using medication to try to assist someone who is struggling with self-injury or struggling with aggression or is having significant mood issues and we are utilizing medication to try to assist them.  To Alicia’s point, if both parents aren’t buying into that treatment and one parent is giving them medication and the other one is not, then that’s not ok. You as a team have to make a decision, either we’re going to use this medication or we’re not and sometimes the decision not to is unethical. They’re hurting themselves. Unfortunately it happens. We try to avoid it as much as we can. Some of these decisions that families have to make are not easy ones. It’s difficult enough, but without having the parenting aligned, it’s quite challenging.

Penkunas: Shifting gears a bit, let’s talk about education. How does a parent go about deciding where their child should be placed — what educational setting?

Imboden: All these things are team decisions. Obviously the parent is a big part of that but there’s a lot of information that is gathered through testing, through assessments to try to determine where and how to best meet that child’s needs. There are so many options out there for parents through school districts, through private programs. I would never say that any one is better than another. We have all said that this autism spectrum is so wide every child has such unique needs. Speaking of Vista here, we have some students that have been with us and then gone there because that was a much better fit. It just depends upon what that child needs. The IEP team meets and you do the best you can with the psychologist’s input, with the speech input, the teacher input to make the decision and that can change over time and it should. It should be flexible.

Our goal is always to go with the least restrictive environment. For some students that may be a separate type of setting but as we’re able and they’re able to move to something more typical maybe in the public school setting, it generally is a good idea to try to do that to help students be around more typically developing peers as social skills need to be developed. It’s a team decision and it’s based on the different assessment factors that are put into the pot.

Burger: I agree. To find the setting that is the right intensity, be it private, be it in the public school, because our goal should always be to go back to the least intensive, which would typically be the public school setting. I agree with what you’re saying, Keith.  It’s gathering all the information from all relevant team members of how this student is progressing. It should always go back to their student progress because it just might not be the right match programmatically or the methodology that’s being utilized, no matter the setting. And if it’s not, then the change needs to be made, and that should be a very open conversation with all team members. Is it always pretty? No. But there should be a very open conversation and as a parent some families aren’t as informed as to how to go about that process and how they can advocate for their child—their role in it. To know that their perception and their evaluation of how their child is progressing if they’re not meeting their goals they should by all means go in and advocate for something to change. They might still stay in that setting, but maybe it’s a different program maybe it’s a different therapy, a different assessment or maybe it is a completely different location. From the school district perspective, they’re also looking at the same information and if the student is not making meaningful progress or they’re determining they cannot meet those needs, we’re having some of those conversations with our students. We just don’t think we’re the right fit. Data’s not progressing in the right direction. We’ll admit it. We need to be very transparent with, ‘not the right fit. What are some other recommendations of other places.’

Imboden: And data will support that one way or another. That’s why it’s so important to collect that.

Burger: It doesn’t lie.

Imboden: I want to encourage parents, because it can be very intimidating to be part of an educational team. You can have a meeting with 10, 15 people and you’re feeling like you’re the odd one out. Everyone else is a professional. Everyone else has all these terms they’re using and it can be very intimidating and I always encourage parents to speak up, advocate. They’re going to come with a perspective that is just theirs, it’s so unique. ‘I’m the mother. I’m the father. I love my child and I know them in a way that you don’t.’

Tell us about that. We may not agree sometimes, but we need to know that. I encourage parents to really be an advocate, to be as involved as they can. Those are the most successful students we have.

Burger: Right? I love that.

Imboden: Even if they challenge us. I don’t mind that because I think it helps us, it makes us better.

Burger: I agree.

Murray: I always tell families when they’re headed into a situation, you may be in a room full of professionals, but you’re the expert.

Imboden: That’s exactly right.

Rice: And there are wonderful resources out there for parents, like Autism Speaks and some of the groups out there. Parents that go through this process probably have better advice than I would have. When the kids come into the center they meet with our social worker and she lays it out for the parents, ‘Here are some things you should be thinking about, you should seek out some of these support groups.’ One that will help with what we just talked about, keeping your marriage strong and healthy and another one when you’re faced with school—school decisions. Here’s a great resource for that. So they need to use the resources that are out there but also trust themselves.

Laudermilch: I think you’re right. I think sometimes parents are intimidated and they don’t realize that they have rights that they can pursue with the child. You’re not always going to have a parent who’s going to want to challenge the school. And I’ve talked to clients about those aspects as well. It’s not meant to raise issues or concerns, but maybe a parent just needs to know that they have a right to be able to do that because like you said, they are the expert with their child. They know their child. And then you all have the information to be able to help them.

Tina Laudermilch discusses family law concerns while Leslie Penkunas and Keith Imboden listen.

Penkunas: Meanwhile, they’re signing all those documents, and they only have so many days to contest it.

Rice: Research is critical. We all research. I was just buying a football and I had to research the best football out there. [Laughter] Research. It’s out there. It’s at our fingertips now.

Penkunas: How about those older kids with ASD who are doing okay academically in middle or high school, but socially they still need support?

Imboden: We have found the past few years that this has been a growing area of support need from school districts. We’ve had, just for example, three years ago we had one small class at a high school with a few kids who were academically capable, but had significant challenges when it comes to social cognition, executive functioning, self-regulation. Just the things that they struggle with. And we now have three classes — full — one at the middle school and two at the high school. It’s more about the reaction of adults. Students who are, to use a term that I also wish we’d never developed, high functioning students who are academically and intellectually capable, appear to be like other typical peers, and what you don’t realize is that they are struggling a great deal to react properly in social situations. That is when that gap really widens. Middle school, high school, they’re becoming more isolated at times, they are having difficulty communicating with their peers and then behaviors sometimes occur. Not every day, not all the time, but on occasion, and schools don’t know what to do at this point. These students are verbal, they’re intelligent, but we’re finding that we need to provide as strong a programming for these students as for others. We may not have to teach them how to verbalize, we may not have to use an iPad to communicate, but they’ve really got to learn how to interact, how to engage in conversation appropriately. How to initiate conversation. How to stay on topic with their friends. How to regulate all that goes on in a high school that can be overwhelming for any student, let alone someone who has trouble with flexible thinking or that kind of deficit that they may have. That’s an area that we’ve expanding and we need to continue to provide support for schools and families.

Murray: So that’s what we do all of our research in, for all of the reasons you’ve just described. At a time when people are heading into the most socially complex part of their lives, right? Adolescence. And we know that social processing is the core deficit of ASD and what do we do? We support them less. It makes absolutely no sense what so ever. And I think part of the reason why the field has done that is I think we don’t know what to do. It’s not something that’s been studied widely. If you look at social skills literature for Autism Spectrum Disorder, there are several hundred studies published, the last time I checked. Of those several hundred studies, three were on adults, 14 were on adolescents and the rest were on children and preschoolers. Children and preschoolers: we teach them to play. That is very rules-based, it is very activities-based. It is structured. You teach them a core set of skills and they’re good to go, for the most part. You look at adolescents, and that’s not what happens anymore. It’s all about social communication and being able to navigate contingencies and being able to understand and being able to read other people and modify your behavior based on what they’re saying. All those things that just happen naturally for most of us just don’t happen. And you see that gap starts to widen. And what really starts to become challenging for these adolescents is that they had a period in their life when they were successful. They were integrated into the group and playing on the playground and were accepted by peers and then they move up and that social interaction style has changed and they didn’t change with it and they’re not accepted by their peer group and it’s devastating. In addition to all those things you just talked about, now there’s anxiety and now there’s depression and there are some mental health concerns so we do a lot of social skills and interventions to figure out strategies to support those folks with those needs that you just described. We have a two-year longitudinal study that we’re looking at starting — social engagement, community engagement,  anxiety, depression, things that are repeated measures every couple of years while we’re pairing that with self-advocacy, self-regulation, anxiety management program that they get through that curriculum to see if that starts to change how things are. So we have a lot to learn. I would love to say that we’ve figured a lot of it out but it’s still a work in progress. The good news is the field has definitely heard that cry loud and clear and is moving in that direction. Oh my gosh, it all gets so much more confusing when the structure of school goes away. It kind of angers people — school — now that goes. There’s a lot of work to do but the field is working really hard to catch up.

Penkunas: What is being done right now in the schools? What social interventions are being done now with middle schoolers and high schoolers?

Imboden: The biggest difference is that our teachers and our staff are daily doing social communication, social skills type of activities. How to engage with one another. It may be done through role-playing, it may be done through very specific lessons. A lot of our students, the reason they struggle with that social interaction is they may have a difficult time seeing beyond black and white thinking, so I can’t get past this past this particular way of viewing this particular situation, and so our staff really work on helping them get past that. It’s challenging but to do these stories, to do these role playing really does help in these non-threatening situations, in more casual, positive situations so that hopefully that is generalized out in the general classroom. We provide a lot of support to other adults, too. I think it’s important for schools for the regular education teachers and the counselors and the other staff to recognize and understand what these students need again, like I said, it’s easy to expect that a student with autism who is sitting in math class every day will do what he’s supposed to do like every other student; but he may not on a given day, and he may really be struggling with how to interact. Helping the adults know what to do in those situations is important as well because it’s not going to work to do the typical, ‘Well, go to the principal’s office,’ or ‘You’re going to go to lunch detention.’ That’s not generally going to be effective. I think teaching adults as well as helping students learn those skills is really what we do every day. It’s just a lot of practice that makes the difference. We have a long way to go, though.

Murray: One of the things I’ve seen schools starting to do is do a lot more of the education and support of the peers that are surrounding them. If you can get them to understand those needs so that they don’t have to question someone looking different or not quite being proficient in certain conversation skills and being more accepting of that—just like they were when they were younger, and try to reengage that — I’ve seen those programs be really successful, too. I think it is a community-based kind of school, community-based, teachers to students, but students who are surrounding them as well.

Penkunas: Is there any topic or question you want to address?

Rice: Tina, statistics are high overall, not just with families with autism, but with families with special needs. How to maintain a strong marriage. You know of places that deal with family counseling?

Laudermilch: Obviously I deal with a lot of separating and divorcing couples, so we do parent counseling regularly. But we have folks who are in tack and sometimes need some help. We have our go-to folks. It can be challenging to find people—there isn’t a large pool.

Rice: So if a family’s looking for that, where would I send them?

Murray: We have resources in our group.

Laudermilch: There is a great resource a Hershey. And you have to look, but there are family service groups out there that are very good. Hershey. Pennsylvania Counseling Resources.  There’s a group in Mechanicsburg called Winding Creek. And New Passages.

Burger: Some of our OTs on our campus have developed a list of even hair dressers, dentists, optometrists, and we provide that to our families.

Murray: I think ASERT Resource Center can also be helpful for folks just trying to figure out how to connect with other families or how do you be a better advocate for your child. The website and the call-in center are resources as well.

McCoach: I’m curious if anyone on the dais has a child at home who has autism and if you’re willing to share with the readers a little bit about your personal journey?

Murray: My son Brennan is 20. He’s a student at Vista. So Alicia and I go way back [laughter]. Brennan uses an iPad to communicate. He does not have a lot of expressive language at this point, but he’s at a great place in his life right now. He’s super happy and is exploring all kinds of employment options for himself in the future and he’s being supported by Vista while he’s doing that. It’s funny, when we were talking about those reactions when people get the news and they’re struggling to figure it out, man, it took me right back there in a flash like what that’s like. I definitely know the journey as well—on both sides.

Laudermilch: One other thing I thought of. To the extent that any of you do interact with parents who are separated or separate families, one of the other things that I do see at times is from the support side of things. Typically support – like child support – will end when the child turns 18 or graduates from high school. But there are exceptions. And those exceptions are to the extent that the child is not able, due to some sort of medical, mental, emotional disability that there could potentially be that resource out there. And I think sometimes parents don’t think about that. They think, well, they’re 18, but if that child is not able to be independent and on their own, then that potential financial support could go on for much, much longer.

Burger: The funding isn’t really that accessible for a lot of our individuals now. County funding. Most recently it’s taken a turn for the worst.

Rice: At Schreiber, we’re trying to tackle some of your last concerns and pull together some social sensibility programs and we have an activities and daily living room. We’ve designed this room that’s like a little efficiency apartment so that we can prepare them to move on and learn to cook. But insurance companies can be a little bit difficult so then we’re asking parents to pay more, pay a cash-based price, and that’s difficult. We’re working. We’re trying to get that. Our family surveys come back constantly showing that we need some programs for our older teens.

Photo/Amy Spangler

Angie Rice

Imboden: As somebody noted, the school is a very safe, structured environment and it goes away at some point and it’s really hard to move away from that to the post-school. A lot of parents shift their thinking as their child moves up cause now they’re a little scared that my child will be 21 someday and the school will no longer be able to offer an IEP. Wow, what are we going to do? While initially their thoughts were on supports that can be provided in school, now it’s a matter of transitioning programing to get there. That’s another area that needs to be beefed up.

Burger: You talk about being an informed consumer, right? Families just get the school. I’ve got this under my belt and then I navigate this. Now there’s what’s post-school. And that’s completely different and very much uncharted territory.

Rice: And there’s wonderful rec programs out there. Wonderful camps. I’ve been trying to develop this camp. Kids on the spectrum are very black and white. You can have all these wonderful programs but they’re programs for them. I need to bring an inclusion program with typical peers so they can work on that. Because if you just put a bunch of people who all see just black and white, it’s very safe. I need to add a little grey, and it’s hard to find that, for the community to come in and join me. That’s my goal.

Burger: That’s a good goal.

— End —


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