STACY PHILLIPS: OK. Hello, and welcome, everyone. Thank you for joining us today for our Families First presentation entitled We are in this Together: Parent and Professional Perspectives for Supporting your Ausome Neurodiverse Child presented by Jamiel Owens and Dr. Jessica Lax. My name is Stacy Phillips. I am the Project Coordinator for Educational and Leadership Development at the Institute on Disabilities at Temple University.

And this session is being recorded and will later be uploaded to our Institute on Disabilities website if you want to view it again. Also, at the end of our presentation there will be an evaluation link dropped in the chat if you wouldn't mind taking a couple of minutes to fill that out.

Families First is a free empowerment training session on the basics of early intervention in Philadelphia. Families First is sponsored by Philadelphia's Department of Behavioral Health and Intellectual Disability Services, or BHIDS, as well as Elwyn Learning Services. And it is a Philadelphia Interagency Coordinating Council activity.

I'm going to introduce our presenters for today, and then I am going to pass it off to them. So our first presenter today is Dr. Jessica Lax. Jessica is a licensed psychologist and Pennsylvania-certified school psychologist who earned her doctorate degree in clinical psychology from Chestnut Hill College. She also completed a certificate of Advanced Graduate Studies in the School Psychology at Eastern University.

Dr. Lax is currently the Clinical Director, overseeing outpatient diagnostic, evaluation, and blended case management programs at SPIN, Inc. SPIN is an Autism Center for Excellence that provides diagnostic evaluation, therapeutic services, blended case management, and ABA for individuals with intellectual disabilities and autism across the lifespan.

Dr. Lax has the knowledge and expertise in child development, treatment of autism across the lifespan, and gold standard evaluation practices to diagnose autism spectrum disorders in early-- in children as early as 18 months. She also received extensive training in psychoeducational evaluations, and has experience working collaboratively with school district teams. She has both personal and professional passion for inclusivity and advocating for inclusive practices to ensure that everyone lives their life of possibilities.

And now I'm going to introduce Jamiel Owens. Jamiel, as the father of a 14-year-old boy on the autism spectrum, he is truly an advocate for his son Shayne and other autism parents. Jamiel has been through many challenges and triumphs in his life as a disabled individual himself, which has led him to give back to other men that may be experiencing the same issues within their own life, but without someone to speak to about them.

He was raised in North Philadelphia and serves his and other communities as a law enforcement officer, a civil servant, and is currently a volunteer firefighter and EMT. He serves as the Family Relations Coordinator at the Center for Research at CHOP.

So if you have questions, we're going to ask that you drop those in the chat, and there will be time to answer those questions along the way or at the end of each presentation. And we will have a break in between. Karen-- excuse me, Dr. Jessica Lax and Jamiel Owens. And I'm going to pass it off to you guys. So thank you so much for being here. We really appreciate you.

JESSICA LAX: Can everyone see my screen? OK, perfect. And I should have also said within that spiel of things that SPIN offers, we do also offer early childhood education, which is a huge part of our continuum of care.

So what I was hoping to do today is kind of give you a very brief overview of what autism is and to talk about the professional perspective. And then also, how I see-- and then Jamiel will have his own perspective-- on how I see us collaborating in terms of families and professionals.

So autism is a neurodevelopmental disorder, which means, simply put, that a person with autism's brain just processes information differently. They think and perceive and experience the world differently than the majority of other people, but not differently than all of these other diagnoses that are on the neurodiversity spectrum.

So I think people with autism think and perceive and experience the world differently in their own way. But everyone with neurodiversity means that their brain processes information differently.

And different doesn't equal wrong. I think a lot of times when parents come to see me, it's certainly a grief process. But it's not a life sentence, and I think that's the hope that we really try to give people.

The famous saying that I'm sure you all have heard is if you've met one person with autism, you have met one person with autism. And that's because even though every single person on the spectrum has a very specific constellation of symptoms, every person's symptoms manifest differently.

And what I mean by that-- I'll kind of go through that. In terms of the criteria to get diagnosed with autism, you have to have this three prong. And at any point if you don't miss-- if you don't make one of the prongs, it has to be something else.

And so that's my job when kids come to see me is to think, is it autism? Are they meeting these three prongs? Or is it something else like trauma, ADHD, a language disorder?

And so these three prongs are communication deficit, a socialization deficit, and at least two repetitive behaviors or restricted interests. And when I'm talking about those three things-- like, let's say it's just a communication deficit. That's really all I'm seeing. They're really able to use eye contact, shared smile. They're able to take turns and to have some back-and-forth interaction, but they're just really not able to communicate their wants, needs, and emotions effectively, verbally or nonverbally, then I'm going to look more at a language disorder, right? If it's just that one prong. So that's kind of what I'm going through when I see a kid in my office.

Communication deficit is sometimes the hardest to explain to parents. When someone comes in with their 18-month-old, this is typically very simple to talk about because their child is usually nonverbal, only saying a few words. And we know by 24 months, they should have about 2,400 words, and they should be starting to put them together in two to three-word phrases. So when they're little guys and they're coming to us, it's usually because their speech delay is significant enough that the doctor or someone in their family has said, like, hey, I think you've got to go get them evaluated.

When they're older-- because we see another spike in our kiddos coming around 3rd grade. Because if you think about the age of eight to 10, this is our kiddos who really met their milestones on time largely, but now the social demands are so great, and they need to be flexible in their thinking and in their ability to interact with others that now they're flagging as being kind of that awkward kid who's really struggling to socialize. And those are what people typically refer to as higher functioning or on the higher end of the spectrum.

And so when we see kids with communication deficits at that level, it's usually because they have professor-like speech, like pedantic speech where they're speaking like an older person in a little person's body. They're using words that are very mature for their age. And they almost sounds rehearsed. Like, they've learned-- because they have average intelligence or even high intelligence, they've learned how to mimic other people enough to fly under the radar.

So communication deficit can look very different. It can be someone who's nonverbal, but it can be someone who's hyperverbal and can't share their talking space and is speaking well above their age range.

And I think socialization deficit is the hallmark feature of autism, and this is the lack of reciprocity. One myth that I love to make sure everyone knows is it doesn't mean a lack of social interest. Just because [LAUGHS] your child is running around with the other kids on the playground doesn't mean they don't have autism, because what we're really looking for is that two-person, back-and-forth, cooperative, interactive play.

So I'll have parents come in and say, but my kid chases and runs around the playground. And it's like, yeah, that's great. That's certainly a foundational skill is to have social interest. But we need the reciprocity, the ability to have back-and-forth or two-way interactions, and to also be able to what we call theory of mind, put yourself in someone else's shoes and know that they must feel this way because that's how I would feel in that situation.

And so that's the hallmark feature that we're looking for in terms of the socialization deficit. But again, this can have a very wide range of kids who are completely not interested and like to be by themselves and like, do not bother me, and that's A-OK too to talk with parents about that. It's like, just because you want them to have friends doesn't mean they want to have friends, and that's OK too.

And then we have the spectrum all the way to kids who are super socially interested. They know when they're not having friends and they're very sad about it, but they're just really struggling with how to accomplish that cooperative interaction. I hope that that makes sense.

And then in terms of repetitive behaviors, this is the thing that's most obvious to people. When kids are over the age of three and they're still hand-flapping, rocking, doing those stimming type of behaviors, stereotypical movements, the shifting back from one foot to the other, that's very apparent. So that's certainly part of the criteria, but it doesn't have to be.

So if we're talking about those kids that are higher end on the spectrum, they typically have the mental rigidity and the very intense interest, and they don't present at all with the stereotypical movement. And I think sometimes that's confusing too.

So in terms of restricted interest, this could be something that is way above their age range. I'll use my nephew as an example. He has a very intense interest in dinosaurs, and he can tell you every single dinosaur maybe that you didn't even know existed and ones that look similar. He will correct you when you say the wrong word.

When we go to the aquarium, he loves the aquarium, but he also really loves to look at all the prehistoric that no one looks at on the wall-- if you ever go, now you'll know-- all the prehistoric versions of the aquatic animals. So he has a very intense interest that's paired with a very high skill level. So we'll see that sometimes.

And then we'll also see things that are just unusual, like kids who collect rocks or kids who know all the maps in the area. Or maybe it's just that they're super into Mickey, but they have to wear Mickey underwear and they have to have Mickey on their bedsheets, and they can only eat on a Mickey plate. So restricted interests and unusual interests can look a little bit different for every kid, but it's a flavor somewhat of that. And then the mental rigidity that comes along with very specific routines, having things have to go a very specific way or order, those types of things also go in this section.

So does anyone have any questions about those three prongs? Again, every single communication, socialization, and repetitive behaviors and restricted interests, it could look different for everyone. But everyone with autism has to meet those three prongs, or it's something different. Does anyone have any questions about that? I can't see anyone.

STACY PHILLIPS: This is Stacy. I don't see any questions in the chat, but if you would like to use the Raise Hand feature and ask a question, please feel free.

JESSICA LAX: Yeah.

STACY PHILLIPS: And if not, we will move on. That's OK too.

JESSICA LAX: Yeah, and this is a very brief overview because I want to give a lot of time to Jamiel and the kind of working together idea. But some other associated challenges are sensory integration challenges. I think some people are always surprised to learn that they have nothing to do with the criteria.

But most of our kids with autism have sensory difficulties like sensitivity to sounds, picky eating. And that kind of goes on to gastrointestinal issues too because one of the associated features of autism is low muscle tone.

So now we're pairing low muscle tone, which means their gut is moving the things that they put into their system a little bit slower than others, and now they're a picky eater on top of it. So that restricted-- the restricted items that they're eating, which is mostly junk food or [LAUGHS] dinosaur chicken nuggets maybe. And then their low muscle tone, that together pairs with GI issues like constipation, sleep disturbances.

We don't totally know exactly why, but we do know that there's differences in the sleep waves of kids on the spectrum. And so we'll often have kids who struggle to fall asleep and/or stay asleep, or both. And then we know that there's a much higher comorbidity with seizure disorder. Does anyone have any questions about those?

And also, sensory integration challenges are difficult because everyone has them. I tell people, people chewing near me is a huge issue for me. I cannot handle it at all.

But it's when you have something almost in every category, or it's so significant that it meets this threshold that it's really impacting your functioning. So that's when we think about sensory processing disorder. OK.

So kind of the thing that we wanted to talk about today is all about collaboration and that we're in it together. And so the next few slides are what the professional, I think, has to offer, from my humble opinion, and what I think we need-- as a psychologist, what I would like to see from parents.

And so what we have to offer is obviously the expertise in child development. A lot of these things I just talked about we see so early on but, you have to have the eye for it. For example, at six months when you say someone's name, like, Jessica, they should immediately turn around and look towards you. It should be instantaneous. By three months, we have that shared eye contact and social smile. So these things happen so early on, but often we don't notice them until later.

And by 18 months, there's a very strong reliability that what they score at 18 months is what they're going to score at later at life. So that's why 18 months-- and the faster you diagnose, the better the treatment outcomes are going to be. So the earliest-- the earlier the better, which is going to get into my next slide.

Expertise in diagnostic procedures. That's SPIN. We have the gold standard of an autism rating scale, the ADOS, which is the gold standard play assessment. And then the caregiver interview, we call it the ADIR, the modified ADIR. It's the structured interview that goes along with the ADOS because autism is a forever diagnosis across all settings, right? It has to be everywhere.

And so we need the parent input. We need to see it ourselves in the clinic. We'd love to hear if the teacher sees it as well. And that kind of gives us the overall picture. So that's what our diagnostic criteria is, that SPIN, because we are really teasing it apart among a lot of other things that can also look like autism.

We have the expertise in treatment. ABA is really the soup du jour in this area. It's really based on skill building services, looking at where the skill gaps are and doing intense training in that.

DIR floortime has a little bit of a different theory, but the same outcome. The theory of DIR floortime is that if we can increase our social network and we can get kids to be more aware of the people around them, then that in and of itself is going to help to build the skill levels than it does. And so one is more of a relational model and one is more of a skill building model, but both kind of get the same result.

And then obviously, family therapy because I think that it really is a family on the spectrum and how everyone reacts to each other and how everyone responds, how everyone teaches how to experience and understand and respond to the world, it really has to be an all-hands-on-deck approach. It's not just the child that is the problem. It's the entire system that kind of has to make some changes and work around, you know, how they're going to be a new dynamic. We obviously have some good parenting tips and tricks.

And then compassion and empathy. We are humans too. We have our own families with hopes and dreams for our children, nieces, nephews, friends' kids. So just because we're the experts doesn't mean we don't mess up-- that's supposed to be up-- with our own children too. I think just because you're a psychologist doesn't mean you don't lose your temper and lose your shit sometimes. So it's important to know about us, I think.

What we need from parents is to ask for help. There's no shame or blame in asking for help. And children's brains are at their peak time to learn about communication, socialization between zero to eight. That doesn't mean if you miss that age range that it's all over. Don't get that from this message.

But if you think something's not quite right, come and ask for help. Go to early intervention. Get an EI evaluation. Come see us at SPIN, because the denial and shame and lack of engagement are kind of our biggest barriers to progress.

We definitely need collaborations. We're experts in autism and symptoms, deficits, behaviors, but you're the expert in your child. And unless you bring that to the table, which is, like, 60%, 70% of what we need and 40% is the professional, we're not going to get anywhere.

Being open-minded and willing to try it again. You are the expert of your child. But also see maybe if we take a new spin on it, it could possibly work. We hear all the time, like, that'll never work. I've already tried that. But trying to be open-minded because we really need to use trial and error sometimes to find the best treatment plan for your child. Because if you've met one person on the spectrum, you've met one person on the spectrum, so everyone's going to need a little bit of a different flavor in their treatment plan.

Ready to do the work and be consistent. We're only seeing your child for a short period of time. Even in ABA with our highest amount of hours, we're still only seeing your kid, like, five hours at best a week. And that's only five days a week. So you're seeing your kid all those other times. And every single time a child gets to do it differently, that's super confusing for their brain.

If we think about their rigidity and just how everyone learns and develops the best, consistency is when the best gains are going to happen in the fastest way possible. So making sure that every single person that cares for your child, whether it's you, the teacher, your ABA team, your therapist, if everyone has the same expectations and responses to that child, that's when it's going to be the best situation. And keep records. That's every-- if it's not on paper, it does not exist. That's my [LAUGHS] lasting tidbit.

And I just wanted to end by saying we're asking a lot. We're asking a lot of parents. We're asking a lot of families. We're asking a lot of kids who have autism. The world was not made for neurodiversity, although we're getting better as neurodiversity becomes the majority and not the minority.

But if we think about kids even just having to go to school, we're asking them to go into crowds with people who may seem to speak a different language because they're just not keeping up to pace or they're not perceiving language in the same way. We're asking them to act and conform with other children, to change their routine, to think flexibly and to act flexibly, not just academically but socially, and to be around all these different sensory inputs. And gosh, that's a lot of things to ask a little kiddo to do.

And we're asking you to deal with all of the things that come along with asking them to do that. And so be kind and be patient with yourself and your child, and that's my lasting remark today. I really talked fast. If anyone has any questions, please let me know.

STACY PHILLIPS: Yeah, this is Stacy. There's no questions in the chat yet, but I'll go first. Maybe other people will be brave if I go first. It's so interesting when you list all of these things together and the three prongs because my child does not have a diagnosis of autism, although there are definitely so many things that tell me that he leans that way.

But the communication is there. He's hyperverbal, and like you said, that pedantic speech. We get that often. And there's picky eating and GI issues and sensitivity, but no autism diagnosis throughout. He's got the other things.

But it's so interesting to me, the things that he does, and the things that he experiences mimic so much. So I guess, what is your advice to parents who don't technically have an autism diagnosis? Is there a route I should be taking as a child diagnosed with ADHD, speech and language impairment, anxiety, and depression, and GI stuff and picky eating and sleeplessness? There's so much happening with him, but it's different. I don't know.

JESSICA LAX: Yeah. So I think when they say the autism spectrum, one thing they sometimes leave out is that there are people on the other side of the threshold of meeting criteria of just over it who do have a lot of similar symptoms, but just don't meet that threshold. I also think whenever a kid has a language thing plus those other things, the difficulty is that there aren't-- there aren't as many resources out there when you don't have the autism diagnosis, and that's just unfortunate.

So what I would suggest that parents do is to find social group-- like, social skills groups that involve all kids who have difficulties with socialization. And they don't have to have the autism spectrum diagnosis. And to get into therapy, family therapy.

And to advocate really hard for your child to get whatever they need at school, even though they might not qualify for an IEP, although they might-- speech and language. They could at least hopefully get a 504 plan with some accommodations to give those sensory breaks they need and whatever else they need to be successful in a school setting.

And to get re-evaluated. I know that never sounds great to tell a parent. But just because one agency told you no, that might be true, but it might be worthwhile to getting a second opinion. Yeah. Not that I'm saying your child has autism. That's just my general idea for everyone.

STACY PHILLIPS: Yeah. So just a little background. He does have an IEP. It started off as just a speech IEP, and then evolved from there when he had the ADHD diagnosis. I'm also a special educator by trade and was an autism support teacher in Philly for 10 years, so I knew what I was looking for, and I knew very soon-- he was probably three and I was like, something's going on. Not exactly sure what.

And I advocate fiercely for him, for sure. So thankfully, he's in a great place school-wise where he is getting those services and things like that. But he's almost 12 now. And every time I see any kind of presentation on autism, I'm like, maybe. And then I think, is it silly at this point to get re-evaluated? I know that he's been re-evaluated in school a couple times. Obviously, every three years. And no one's ever said autism. None of this [INAUDIBLE] ever brought that up.

JESSICA LAX: Yeah, when I worked in the school-- when I worked in a school district, they weren't-- they really didn't-- as much as autism is in the school, I was really surprised by how much school psychologists were not aware and not qualified to really evaluate that. They really just have rating scales, and there's very few people who can do an ADOS, because that's just not part of a school psychologist.

A lot of school psychologists aren't even doctoral-level psychologists. They have this in-between thing called an EDS. And so they're really experts in ADHD and language disorder and all of those educational classifications. But autism, even though that's an educational classification, they really lean on outside agencies to provide that diagnosis.

I'd also say that ADHD and a language disorder are overlaps, right? If we think about-- and I don't know your child in terms of repetitive behaviors, but I didn't really hear that part of it.

And so it's not uncommon for someone with ADHD who's super impulsive and distractible and really has a hard time keeping in line with the conversation and even with play interactions, because it's like, oh, I found something new. Like, oh, this is where my mind is, going kind of a mile a minute and not being able to stay focused in the conversation or in the play interaction, or being impulsive and wanting to go do their own thing. It really leads to peer relational difficulties, especially when there's difficulties with emotion regulation and they have behavioral issues. Now it's like, well, I don't want to be friends with the kid who's the bad kid.

So these issues, which are ADHD-specific but look somewhat similar to autism difficulties, can lead to peer relational issues. And so when we're thinking about ADHD, having peer difficulties is not just an autism thing. It's also other neurodivergent diagnoses.

And I think if you pair speech disorder with that too with ADHD, now we've hit two prongs on the autism spectrum. That's what I mean by the trifecta and really teasing this apart is that it could be-- right? Like, let's say he's struggling to interact because he's kind of all over the place, and now he has a speech disorder so it's hard to follow along with what people are saying. And he-- sugar. I just lost my train of thought of where I was going with that. But you get my point of how it could be something different.

STACY PHILLIPS: Thank you.

JESSICA LAX: [INAUDIBLE] ADHD, I just lost my total train.

STACY PHILLIPS: [LAUGHS] That's OK. Yeah, we recently got him into therapy with an art therapist, and that's actually been phenomenal. It took me two years to find an art therapist that had availability, but that's actually been a really big game changer for us. So I'm a big proponent of music therapy and art therapy.

JESSICA LAX: Yes. We have a music therapist--

STACY PHILLIPS: Therapy.

JESSICA LAX: We have a music therapist that's been, but we lost our art therapist. I would say also in terms of-- one thing I forgot to mention in terms of socialization is that when your kiddo-- when anyone wants to learn and grow, they do so by being with people who are above them. Even me. I learn and grow by people who are better than me.

So if we think of it that way, and if his socialization's right here and his neurotypical peers are here, then what also could be best is maybe not an actual social skills group, but to get him in a neurotypical event that he really enjoys that's not going to be taxing on him, but that he also has to involve cooperation.

So if you think-- like, let's say he does art. Let's get him in an art group where he has to collaborate with a peer to make the final project. If he likes sports, that's great, but a lot of our kiddos might not like sports. So I'm not going to put a kid who struggles with social skills in sports and then have a double whammy of terribleness.

So you want to put them in something that they really love and thrive, but also is going to require them to do collaboration. Let's say they like LEGOs or robotics. Let's get them on a LEGO team or a robotics team where the final project does have to involve everyone. So also think of it that way. It doesn't have to be something formal. It can be something informal.

STACY PHILLIPS: That's so great. Thank you so much. Does anyone else have questions or comments? If you're not brave enough to unmute, you can always type them in the chat, and Karen and I are happy to read those to you, or for you.

JESSICA LAX: And if it takes you a minute to process my ramblings, you can always put it in the chat later.

STACY PHILLIPS: Thanks, Jess. Much appreciated. So think we're going to move on and let Jamiel have the floor, and then we will have time for questions after his presentation as well.

JAMIEL OWENS: Thank you, guys. First off, thank you guys for sharing this Monday with me. Happy Juneteenth to everybody. As a male from the Black and Brown community, the real focus for me personally about Juneteenth is just exploring different cultures. So I'm not going to get any more into it. Just explore different people, different cultures. Just be robust in different ethnic backgrounds all across the world. That's the best way to grow as a human being is to be versed in all different cultures all around the world. So today, we celebrate that.

But thank you for having me here. One other shameless plug I want to put out there is I'm going to put a link in the chat. Please don't feel obligated to, but I'm actually fundraising to go across to another part of the world with an organization called Global Autism Project, a nonprofit organization in New York.

I'm fundraising right now, basically, to be a part of their skill core team. What that is is a leadership building team that will allow me to go over to-- it's two places I put down for, so it's India or Ecuador-- and actually educate their respective therapists or teachers over there. But also too, get a lot of insight on what they're doing with their therapies and their children and bring that back over here to Western culture, Western civilization. So if you would like to support me, the link is in the chat, and I appreciate that.

So let's go into the meat of things. Dr. Lax really, really homed in to a lot of what I'm going to be talking about today, which is-- can you guys see this poster board?

JESSICA LAX: Yes.

JAMIEL OWENS: Great. So I had the utmost opportunity to present this down at Vanderbilt University. If you guys do not know, Vanderbilt University is a very prestigious university located in Nashville. So I got an opportunity to fly down there and really open the floor up to a different way of thinking.

Now, if anybody knows researchers or scientists, it's only one way of thinking. They maybe look outside the box here and there, but it's really just, format it into a linear way of thinking when it comes down to the work that they do, which is fine.

But as we know, me specifically being an autism father, we need to look past that. And after Dr. Lax explaining a lot of things that I've seen personally in my son, the educational component of it, I'm still going to be educating in this, but also too giving the emotional support.

And I'm not just charging the physicians and the teachers and the health care system in general, but unfortunately, parents that are on this call today, I am charging you as well. And we will go over that because we have to have those tough conversations to really jump over the hurdles that we are facing now when it comes to inclusion in early intervention of our children.

So let's start talking about this. It's a lot of information, a lot of meat to this. Let's start with the background. As you can see, I am the Family Relations Coordinator for the Center of Autism Research at CHOP, autism father, podcast host, nonprofit founder, author. So I'm a lot of different things. [LAUGHS] But this one right here has to basically be the sole reason why every one of these different hats that I wear, it started, and that's advocacy for my son and those individuals just like him, those autistics and their families as well.

So background. Let's go into this. Health care organizations around the country are trying to understand why participation and retention and research studies are down. These are just scientists saying, hey, we can't get families to participate in research. Community engagement is the footprint of organizations and their connections to the communities that they serve.

One thing that I know as a parent, and also too just as a person, is that I am more inclined to be a part of something bigger or something greater with your company if I see you in my community more. If I don't see you out in my community more, you're not winning any type of trust or connection with me as a person. Not even as an autism parent, but just as a person. We want to connect with each other, right?

So a lot of these companies, they say, hey, yes, come along and join this, or buy this or this. But then we kind of ask them, well, what are you doing for our communities? Are you coming out there and cleaning up with us? Are you providing after school programs for our kids? Are you bringing in maybe local or national celebrities to sign autographs or perform for families? Like, what are you doing to stabilize your footprint in our communities? That is a big thing.

And this is what I charge to the health care organizations to sit there and say, what are you doing? You know, what are you doing? Is those dollars going back into the community that you're building these large buildings at? One thing I want to open up to the floor with that.

Aesthetically, we engage communities in a bigger scope, but what about the smaller details of the needs for our communities? Once again, are we going out there with COVID-19 tests? Are we going out there with toys? Are we going out there with school supplies? Like, what are we actually doing as health care organizations? What are we doing? How are we helping the community?

And the importance of hiring stakeholders from the community in the infrastructure. Me, I never thought I would actually be working for research even though I had an inclination that, yes, I want to do this. But I have no research background.

And I think me not really just saying, hey, you know what, they should definitely hire somebody like me after being in this position. But I actually see the impact that my organization and the Center for Autism Research at CHOP is actually making because they hired me and they say, hey, we want you to connect with the community. Here's our resources to actually make that happen, and we are going to support you 100%. They just opened the floodgates for me. And reciprocation for that, I'm bringing back what exactly they need, and that's that connection.

So I always tell a lot of different organizations, hey, do you have a person like me there? Is there a person that has that lived experience that is working for your organization? And what are they doing to engage with the community? Because if you don't have a person like that, you really need to sit down and work out a budget to actually have someone in that position. It helps out tremendously as far as engaging with stakeholders.

And what I mean by stakeholders is everyday people just like me and you who have loved ones, who have our children, who may be self-advocates, who may be autistic themselves. Are you engaging with them by having someone on your outreach team? Or do you have an outreach team? It is something that is very, very needed and very important.

The trust cy-- the cycle of mistrust leads to miseducation and misconnection-- misconnections. If we don't trust you, we're not going to support you. That's just the bottom line.

And sometimes companies don't understand that. They're, hey, we're a trusted brand. Yes, your brand is known, but we don't know the person behind the brand. We don't know the executive board or the administrative board that's actually making the decisions for this brand. Do you really have our best interests at heart? And the only way, once again, to be able to have that is through, what? Connection. Being out in the community, boots on the ground.

So the objective of this poster was to educate from a third party's perspective. I actually took myself away from being a health care provider or a health care professional. I took myself away from being a autism parent. I have not been a part of the educational support team, but I have experience from being a part of that educational support team with my son.

So I wanted to give these researchers a perspective when they're talking about, hey, we can't get nobody to interact with our programs. This is the reason why. So we're going to go a little bit-- I'm going to speed up a little bit more going into this.

Who am I? So Shayne, my son, you see a picture of me and him there. 15-year-old autistic male. Very vibrant. He is the reason why I started everything that I'm doing today solely.

Now, I do have a toddler. It's hard to imagine at 40, but I do have a toddler, and his name is Alejandro. So he is the next phase of the Owens bloodline.

But Shayne is very special to me because Shayne-- and I say this all the time-- I believe that our children are God-given. We have a path in our lives that are ultimately going to end in destruction, and I believe that our children are placed in our lives to really divert that path, or at least slow it down for us to really work on our heart and ourselves and what we're actually doing, not only for our families ourselves, but also for the community as well. So I really contribute a lot of who I am today towards Shayne.

Me myself-- you might have heard from the introduction-- I am handicapped myself. I have on my right leg what is called an AV fistula. So things that I've done in my career path has not limit me. But I have felt ashamed. I have felt isolated. I didn't want to be myself around different people.

So the funny thing was is that when I started this advocacy in 2014, it opened up my eyes. It was like, that is so weird that all of these things that are being or will be encompassing in my son's growth, I've already faced. So since I've faced these things personally, it will only be natural for me to give this information out to other fathers, to other families.

I have to do this. And that's really what I believe my mission and my purpose was, is to really educate on what I've been through, my lived experiences, but also what I'm going through with my son, which are lived experiences that are meant to grow me. So this is the reason why I do everything.

Ex-law enforcement. I was a corrections officer in the state of Delaware. I'm an active volunteer firefighter and Hatfield EMT as well. And I'm the Family Relations Coordinator at the Center for Autism Research at CHOPS. So we went through that. All right.

So now, I want everybody to take what I'm about to say and everything, this whole slide, in a grain of salt. And what I mean by that is that it is not meant to come at you. It's actually meant to open up eyes, ears, and start to have these conversations for a more inclusive society.

I need this to actually be heard through the rafters. I need people to really say, hey, I'm not going to take offense to this, but he has a point. Or hey, I want to interject, or I have a point, or I have a question about this, or I have a thought about this. So I want those conversations to start. This is the main reason why I did this as well too is a conversation starter.

So I'm sure when you first get a diagnosis like I did for my son, I felt stranded. It was just like, hey. Your son has autism. Here's our paperwork. Good luck.

And that really made me feel like I was not important enough to really get that extra attention from the doctor from that time, to sit there and say, hey, you know, what's going on with you guys? Are you able-- well, not are you able to handle this, but are you ready to handle this? Is there anything else that I can help you with? Maybe a therapist, maybe a marriage couple. It was in a previous marriage with Shayne's mom. We received a diagnosis at his age of three.

And I can tell you as a male, it completely defeated me. And the reason why is because we are primed to think that we need to be that alpha male. We need to be strong. And therefore, our offspring and our children need to show the same capabilities as the father.

So when you have a child with disabilities, we feel as a failure. We feel as though, this can't be correct, which was one of my feelings. Hey, not my child. There's no way. There's nobody in my family that has autism. There's no way we can actually have a child with autism.

Or if you're a person who has some knowledge or realm about spirituality, you know, I cursed out God. God, why me? This is not fair. This shouldn't be happening to me. It can happen to anybody else, but not me.

And that was a very, very-- a very distinctive feeling that I actually had because I started to grow anger in my heart. And it was towards the doctor. It was towards my spouse at the time. It was actually towards my son too because I had to deal with that as a man. And that's ego and pride. Those are the two things right there that really killed me when getting the diagnosis.

And I can tell you, there are a lot of men out there that are struggling with this. There are a lot of women, a lot of moms that are struggling with this too.

And the one key point that I tell a lot of people is that you need to get rid of the ego and pride. That's the first thing. We should have already done that when we have kids, you know? We always say that. Once you have kids, your life is over. Not drastically like that, but it's now about the children, what you can actually educate them, how you can provide for them. Let them see the world. That's what it's really about.

And in this case as a man, I should have actually implemented that saying and saying, hey, to my partner, what is it that you need? Or looking at my son and saying, I need to understand who you are. Instead, I actually went the other way. I wanted to numb the pain with the riches of the world. You know, alcohol, going out partying, doing everything opposite of what I should be doing as a man.

This stranded feeling that is still unfortunately going on today is leaving families, A, upset, not only at the medical profession as a whole, the organizations as a whole, but also too at that specific doctor. And that doctor is supposed to be your gateway to understanding different treatments. It's supposed to be your gateway to education. But now, you're mad at that professional. So what's going on with that?

And that's limiting and giving that stonewall to parents such as myself. Once again, I'm a person that had that, that become a gatekeeper. I become that person where I'm like, you know what? No, you're not going to do this to my child. You know what? I don't want to hear anything you have to offer.

That connection that we're trying to get, just like Dr. Lax said, hey, I work here. You know, I'm at SPIN. I'm trying to help your family out, but I need you to engage. I need you to meet me halfway.

When we're getting these diagnoses, we're cutting the ties, and that is ultimately a defect in our communities. And it's a disservice that we're actually doing for our children. We can't do that. We have to keep the connection going.

But once again, how do you-- are you taking yourself out of it, or are you leaving your ego and pride in that diagnosis? When you get that information, yes, by all means, grieve. Grieve.

But you're not grieving in a sense where it's like, OK, life is over. My child will never do this and do that. I want you to grieve and understand that there is now new challenges that are being faced to you. And the challenges that are being faced to you, there's no manual for. There's no manual at all for. This is now on a higher echelon, on a different level.

So I want you to grieve because your old life is gone. However fabulous you think that is, you have not felt fabulous until you've lived a life of raising an autistic individual, an amazing autistic individual. That's a blessing in this hole.

So grieve over that old life of self-righteousness and really indulging in self. And now get ready for a life of empathy and compassion. That's what is on the horizon. But we need more supports from the physicians, from the medical providers.

What I wanted these researchers to know is that gatekeepers, we built that wall of mistrust because now we don't trust you. You gave us a diagnosis. You didn't help us. You didn't ask those pertinent questions. You didn't sit down with us and ask us how we are, man to man, woman to woman, or physician to parents. You didn't take that time out.

And I really wanted them to understand that it only takes five, 10 minutes of your day to really make sure that the patients that you're seeing are OK. Hey, is there anything else I could provide for you? If there is, here's my business card. Please give me a call to let me know, what's your family need? I understand that this could be tough for you. You know, what do you need? Please reach out to me. This--

JESSICA LAX: Can I interject with a question, Jamiel?

JAMIEL OWENS: Yes. Yes.

JESSICA LAX: So I unfortunately do feedbacks all the time and give these diagnoses, and I always ask the parent how they're doing.

JAMIEL OWENS: OK.

JESSICA LAX: And they always say, I knew it-- I knew it was coming. I'm fine. I'm fine. And you know they're not fine. And you give them your number and you say, please call me. Just because the feedback was today and our evaluation's over doesn't mean I'm not here. I give them the whole spiel. They never, ever call me. What do you think from my-- like, if you were in my shoes, what do you think is the best way to really help families know you are there and there's other services and supports and there's hope and it doesn't end with the diagnosis?

JAMIEL OWENS: So it goes into that next point where it aids in emotional and psychological distress of the parent, giver, and immediate family. We're going to tell you as a parent, hey, I'm OK. I knew something was going on. We're going to give you that poker face. But inside, we are completely dying. We are devastated because what we feel, that intuition is now confirmed.

As a provider like yourself, I would go that extra step. Now, sometimes it could be a little strenuous. You have a caseload. But also, you have life. You have your families and you have everything. But that extra step to follow up even a week, two weeks after, hey, it's Dr. Lax. I'm just checking up on you. I know I gave you my information. I just wanted to know, is there are any additional services I can ask you?

Or if you're not even comfortable with doing that, maybe send them an email. Hey, listen. I know a diagnosis came from us. I have a great person that I would like for you to connect with, and this is their information. Please connect with them as soon as possible. That is going the extra mile.

And I think a lot of times we're trying to mellow out that work-life balance. But this is really the riches of life, right? It's really helping other people. So in my eyes, when I'm talking about a work-life balance-- yes, I have a family. I have a toddler, I have responsibilities in my household-- but this is part of my life balance.

So people call me all the time on my work phone. They say, oh, you've got office hours 9:00 to 5:00? I'm like, no, it's whenever you need me. You can text me. If I don't get back to you at that time, I will get back to you. And that's what I think distinguishes a lot of us medical providers from the rest is that we will go that extra mile because we want to make sure that they understand that they're not alone.

But it takes all of us. It can't be just 40% of us doing it and 60% is not doing it. So I think if you can find time to follow up with them in your caseload and everything that you're doing-- it doesn't have to be the following week. Let them grieve. Give them that process.

But it can actually be two weeks down the line. Hey, I just wanted to follow up. I know I gave you my information. How's everything? How's the family doing? How's the child doing? Whoever the name. Let's use Shayne. How's Shayne doing? Oh, they're doing fine.

You know what? I really, really, really want to get a second opinion. OK, that's great that you want to get a second opinion. Can I help you find someone else that could give you a second opinion? Be that extra step. That can actually-- that can break down that barrier from a parent like, yeah, I would like that.

And now you are a trusted source, so now that gatekeeper role is out the window. Now they're coming to you because you are the initial person that gave their child, their loved one, a diagnosis, and they're starting to build that trust with you.

I can't-- unfortunately, I can't mock up or I can't cover the fact that us as parents step away after hearing that news. We do step away and we're kind of appalled about it. And a little bit of the trust factor is lost with that, but that's life. That's everything with life.

You can get something in the mail that will appall you and be like, oh, they're always coming after me. The government's always coming after me, or they can't give me a couple more days with paying a bill. I'm struggling here. We lose that little bit of mistrust. That's just natural.

But there is so much more that we can actually do to regain that trust, and as little as a follow-up call. So that's-- if you have the capabilities to do that, if you have someone in your office that maybe can follow up, that's something that I would definitely implore you to actually do.

JESSICA LAX: Yeah, that's a great point.

JAMIEL OWENS: There was another question?

JESSICA LAX: Karen has her hand raised.

JAMIEL OWENS: OK. Karen.

KAREN SMITH: Yes, being very formal. So for those that don't know me on this call, I'm the Blended Case Management Supervisor for SPIN. So I just wanted to disclose my connection to SPIN here.

But Jamiel, I think you have a really good point in that that follow-up call or that email can make all the difference I think for families because I think it's the shock, right? The shock of getting the diagnosis and not being able to verbalize that or kind of let your guard down about that, or any of that.

And I think just to go a step further, I think sometimes to have-- I mean, at SPIN we have a Family Resource Coordinator. Her name is Faye and myself that we're both parents of kids with autism. So I think sometimes being able to pass the follow-up along to one of us sometimes-- it's a different voice on the phone, it's not the person that gave the diagnosis-- can help also.

So I think that that's really a good point that you made. And I think we need to always be thinking about that as professionals, so thank you for bringing that up.

JAMIEL OWENS: No, no problem. No problem. I mean, this is the reason, once again, to bring these conversations to the forefront. And it is something that I can tell you is being recognized not only from CHOP, but also to SPIN and other organizations are starting to really pick up on this and be like, OK, you know what? We could do better here.

So as I'm talking right now, please believe there are health care providers out there that are actually doing some things, but there's a lot of them that aren't. Ms. Cooper, you've got your hand raised.

AUDIENCE: I feel like the last point was well said. As a physical therapist, I work with children in the school and in the home. And making sure everyone on the team can provide resources to the family at different stages helps to reassure them, taking that extra time to follow up with the parents if they're having a hard time with the children because if they aren't well, they can't be well for the children.

So I think that was a great point, and I just wanted to reiterate, and especially since this is the forum, making sure that as clinicians we are well versed in information that we can pass throughout the time with the families, just in case they do find someone that they are more comfortable with. Maybe it's someone who looks like them or who can relate. I think that that'll be essential for giving the kiddo the best support ever.

JAMIEL OWENS: Definitely. Thank you for that. I mean, once again, when I wrote this, I'm not a researcher. So when I wrote this, I'm just writing this from the heart because these are things that I either experienced myself or what I'm seeing when I'm out in the field. So it feels good to get some positive feedback on the things that I'm talking about, some of the points.

And what I'm hoping is that when I left this presentation there in Nashville for these researchers, these doctors, these program directors is that they're taking this home and being like, this man just laid out a whole outreach plan. Like, we can actually build our outreach section just by everything that he gave us and attack it not from the scientifical point, not fact data-- not fact-driven data, but from the emotional support.

That's the point that you need to go in first. The facts are going to be there. You can Google the facts. I don't need to tell anybody the facts. But the emotional connection is something that is often not spoken about, and that is the most prolific part of understanding our children and our families that fall under this community, this beautiful community.

So this is the part where I really stick it to the families. And I don't want any families to feel offended by this. And I want to go into a lot of different things. So you know, that emotional and psychological distress, if we don't take that extra mile, that's going to lead two things. Divorce, depression, loneliness. Those are the two things.

And I see it, and I've been a part of it. I got divorced. My first marriage, I divorced because I wasn't doing what I needed to do as a male. I wasn't understanding my roles. I didn't understand my child, my wife. I was seeking everything else out in society to make me feel like I was more of a man, and it ended up in divorce.

And what that did was it not only put a depression on me. It put a depression on my son's mother, Shayne's mother, and the feeling of loneliness with her and myself. So it was like a tsunami of things that actually occur, and it's continuously occurring right now.

We have-- and we've got to talk about it. We have men that are leaving their families, leaving their child because of their diagnosis. And then we have some cases where Mom is leaving and the dad is actually raising the child. So it is a fact that is actually happening to our families right now. It only takes five or 10 minutes to kind of keep that from happening. Five or 10 minutes to keep these statistics down. It is very, very important.

Withdrawal. A family caregiver from attending a formative workshop event. All right. So the fact of the matter is that we all need to sit there and provide financially for our families. We need to work.

But parents and caregivers, I need you to step up. And what I mean by this is that Shayne has-- I'm going to give you an example of my son. Shayne has a performance. He plays the cello, or he played the cello. He has a performance on Thursday night.

I know two weeks in advance that that performance is on this particular Thursday, right? And I wait until the last minute to ask my boss or put a request in to get off early. I have failed my child. I have not only failed my child, but I have failed myself to understand what brings my child joy.

This happens a lot because we're too hyperfocused on providing for our families and we're not hyperfocused about understanding our child. What brings them joy? What abilities they actually have. Why are we only focused on what is written down on paper versus what we can experience in reality?

My mom was a single mom. She worked her butt off. She did three jobs. She was never at any one of my performances. I can tell you this comfortably. She was never at any one of my conferences. If I got an award, which I received several through my entire time of education, she was never because she was always about providing, providing.

Now, did I sit there and hold any type of resentment? Yes, I did, because I honestly did not think my mom understood who I was as an individual. How do you think your autistic loved one feels if you're never there?

And I think we go into this thing where we think just because they have a diagnosis of autism, they can't have the feelings. They can't have that emotional connection to say, oh, my mom and dad is not here. You know, it's OK.

We're wrong about that. Our children-- our children-- our children are individuals just like they are. They have feelings too, and they feel a separate way in the connection when they have their family around them. It's just-- it's just the thing that we have to do as parents. We have to take that extra mile to make sure we are invested in their interests, and also too what they're looking to do in their educational setting. It's something that you can't change my mind about.

So parents, I need you to step it up. If there's an IEP meeting, I need you to be there. If there is a dance and your child is so happy and excited to go to the dance, even if you know in the back of your mind that he or she is not going to have a date, and that he or she may not even dance, the fact of the matter is that they are so happy to actually be socially in that building, I need you to put your best effort in to make sure that they're there, they look presentable, and they're comfortable.

We have to show up as parents and as caregivers. We have to, no matter what the case is. We have to make that first because now we are showing that support that we are there, and we support them for who they are. They need that confidence in them.

And once you start building that confidence in them, they're going to take the reins. Shayne goes too-- he goes to dances by himself. He goes to just-- we're over in Ohio right now. We had a nice family event. We had a nice party and there was some kids there, his cousins and some other kids that are their friends, and he was over there playing Frisbee and playing basketball. He's like, I just want to be around some other kids. That's his confidence.

Imagine if I would have never supported him, if I would never be at any one of his concerts, if I never would be at an IEP meeting right there with him, talking to his providers, letting them know, hey, I'm very proud of you. This is great. What do you think what? What do you need? It's very important for us to actually step up and do this, so I need parents to understand that.

It's easy for us to buy these concert tickets for Beyonce. It's easy for us to stand in line for hours for some Jordans, right? We can be there. We can be there for our children, and we need to start doing that.

The next thing I want to talk to the families and the caregivers is educational system. We're going to go right into that. But as a provider, we see our teachers, if it's not our doctors-- let's just say the doctor just gave us that paper. We stonewalled the doctor.

Now we go to the teachers and we're like, hey. You are our expert. Why? Because we leave our children with you x amount of hours per day. You know our child like we know our child, even though that's not true. But we want answers from you. Hey, why is my child doing this? Why are they not eating? Why are they coming home with marks? Why, why, why, why, why? This can be overbearing for a teacher.

We have to remember that the teachers are just that, teachers. They are not trained to handle our children. And you can't even hold them accountable by saying, hey, well, this is the job that you signed up for. Yes, I signed up to be a teacher within a neurotypical classroom. I didn't know that I would have neurodiverse children, and I don't even have the lesson plans or even the knowledge to understand what this child actually needs.

That's where I need you again, parents. That's where I need you. I need you, instead of pointing fingers and putting these educational support teams against the wall and saying, you, you, you, you, you, I need you to be like, hey, can we have a meeting? Can I talk to you a little bit more about my son or daughter? Can I educate you on what happens at home? And maybe we can make that linear connection to school and home. How can I support you, teacher? What can I do?

I think as parents, our backs are against the wall and we want to lash out, because we can't lash out at the doctors because we feel as though we're not the experts. But we are. But we shouldn't be lashing out at people. We should be trying to make these connections and being able to articulate our frustrations. We take it to the next best thing, which is our teachers.

And what happens to our children? We either pull them out-- now we're facing truancy-- or we're cursing out teachers and providers who signed up to love on children. It's just that they're not educated.

So let's talk about that. Where am I going with this, you know? I started up here. As parents, we don't want to fight a system that was designed to help that-- excuse me. As parents, we don't want to fight a system that was designed to help our children, but we realize that the miscommunication is often a result of boundaries set up by a system not designed to fit our children with intellectual disabilities like autism.

I have facts here. They're very small. But I'm going to just tell you this. We're basing autism off of a model. This was coined back in 1940. The term autism was coined back in 1940 by Australian-- one Australian Dr. Leo Kanner and Hans Asperger. And we based the model off of Caucasian little boys.

Now, we all know that autism is now prevalent-- or has been prevalent ever since in both boys and girls. It's just that our female counterparts are using ways of masking because of, once again, society saying, hey, as a female, you need to be like this. You need to look like this. You need to act like this. So we are seeing more and more females actually masking their autistic traits.

But the whole premise behind all the research behind everything that we do is an old system. So follow me on this. If we have an old system starting in 1940-- and unfortunately, you know what we used to call that back in the day, "mentally retarded," which is a harsh word. We shouldn't be using that right now. A lot of different things in different cultures and different times in society that people were using, an old model.

But now we have those with autism. Asperger's, other intellectual disabilities that don't fall within that category because they are highly functional, very, very intelligent people. Our children are going to suffer because they're only being amended onto this old structure.

We need to do is we need to actually tear this entire educational structure, this entire country, and we need to build it back up, including our children with intellectual disabilities. This will never, never, ever rectify itself if we do not do that, the reason being is because we are once again only equipping the teachers with educational standards for neurotypical children, not neurodiverse children. We are relying on outside resources to come in and to help aid our children.

That is still putting a hindrance on the teacher. The aid is only there to help make sure that they fall in line with the linear subjects of the class. Sitting down, raising hand, doing homework, test taking, things like that.

But to actually get the educational component, saying, hey, this is what happened on this day, these are the important people you need to know in history, the teacher has to take care of that. So now we're back in this conundrum. We're back in this cycle, this vicious cycle, which-- give an example, my son Shayne. He's in 9th grade, about to go to 10th grade. Completed 9th grade.

18 comes around. He's graduating. He's walking down stage. And I'm like, oh, this is great. But then when I go to ask him about, hey, do you know how to write this, or do you know how to do this? No, they never showed me that in class. What do you mean? You had this?

And then if I talk to the teacher, and they're like, yeah, we went over this. Well, how were you teaching it to my son? So see, it's an old system. It's never going to change. It's never going to get better.

And unfortunately, the school district, other districts around the country are not looking to change anything within the structure because it's a national educational structure. We need to go higher up. We need to go to Congress.

We need to go to the highest that we could possibly be, whoever the Secretary of Education is and sit down with he or she and say, listen. Our children are not getting a fair chance in school. Our children are being pushed through the system to say, yes. You know what? We have tolerated them.

And don't know about you guys, but I don't want anybody tolerating my child. I want someone to say, hey, I love your child. I think he or she is exceptional and they have very much great potential. How can I help place that potential in their lives? How can I be of assistance to you?

But we can't do that unless we actually support the educational team. We have to support them. We have to talk to our teachers. We have to correct ourselves when we're wrong and they're right. But we have to make sure that the education is being implemented on both sides, school and home.

So all this right here, it's little facts, little facts about the first school that was introduced into our society versus Asperger's, where that started at. And look at where we're at now. We have so many children that are being shipped out of the area, the county, Philadelphia County, to the suburbs to go to school versus staying inside of their school district and really thriving with mainstream children. Why is it that a parent has to move in order for means of education for their child?

We are all afforded that right, right? We're all afforded educational rights. Why is it that we must move, a parent must uproot and move to maybe sometimes even the other side of the country to get a good education for their child? Why is that? Because the system is broken.

It's an old system. I don't have no problem saying it. And I come from the system, but it's a broken system. You will be lucky, like my son is, to be a part of a school district that really cares for him. You will be lucky.

But you know what his mom had to do? She had to sit there and sell the house that we bought together and she had to move up to Delaware County. Just moved. She sacrificed. What happens when a mother can't do that? What happens when a father can't do that, a family unit can't physically get up and move because their finances aren't there?

Now we have a family that is struggling, that is close to maybe going through, once again, emotional and psychological distress. And we have a child that's misunderstood, that's labeled, that's not cared for, that's going to be left behind. We have four of those things, and that's a perfect storm.

So once again, if you take anything from this, that educational support team, just love on our teachers, and they will love you back. We have to sit down at the table together.

And that takes a strong parent to say, hey, you're not my enemy. I'm not your enemy. My child is-- our goal, our-- and I hate to use this term-- our child is our achievements, our trophy, and we have to make sure we're pouring into that child. How can we work together? And I implore everybody to do that.

Taking considerations teachers are not trained formally to help support children with ASD or assist with family guidance of a diagnosis. Once again, I told you about that. Teachers don't have the knowledge of this. They don't. They don't.

So is it possible that we can actually include some training for our teachers coming into a school district, into a new school? Is it possible? Once again, that's talking about taking the system apart and rebuilding it up to include our children.

Teachers, we understand that you are doing the best to help educate and care for our children. As we recognize and acknowledge your efforts, we ask that you consider these three things.

So me as a parent, I'm like, hey, you know what? Thinking about wanting to change teachers. These are the things I want you to consider about my child. We as parents don't blame you for the diagnosis, but we do charge you with the responsibility to be innovative with educating our children, both neurotypical and neurodiverse.

So now for the teachers that may be listening to this, whether it be now or later, you are talented and you came to this position. You have a why. You have a creative mind of thinking on how to educate those both early adolescents and those teenagers.

If you are not educated in autism, I need you to be creative. That means you need to go on the internet. You need to educate yourself about this. You need to think about creative ways where you can reach my child.

Maybe that might be having him or her in the front of the class. Hey, Shayne, I know you normally sit in the back, but I need you up front with me. Why? Because I think you're very bright, and I want to make sure you get all of this information, OK? You working with me?

Now, notice what I just did. I just acknowledged my son. I just acknowledged Shayne. I just acknowledged him and said, he's very bright, and I have the utmost confidence in you. And I want you by my s because I want you to learn all this information.

If I was a teacher right now, I just made that connection with that child who is on the spectrum. I made a connection. Now that child is actually relying on me to educate him or her. They're going to raise their hand. They're going to say, hey, Mr. Owens, I don't understand this. Can you tell me something?

Hey, Shayne, I'm going to go on to the next chapter. But after class, how about we talk about what you're actually missing out on this? Is that OK? Yes. Great. And follow that up on after class.

These are the things as educators that you could be doing, and we are going to charge you with that. You have that college degree. I need you to be creative, most innovative that you could possibly be in this life, because this is not going to be the last child that you're going to interact with with an intellectual disability.

Unfortunately, the numbers are going up. You're going to meet somebody else that you're going to have to change the ball. You're going to have to change the routine in being able to stimulate them, to motivate them, to acknowledge them, to reassure them that they have potential and they can learn too, and they are just as powerful as any other child in that room.

Communicate your needs to the parents and caregivers. We need you to know how we can help too. Teachers, you need help? You need to speak up to the parents. Hey, Mr. And Mrs. Owens. Is it possible I can have a phone call with you? Can you come in? No, we have work and everything. OK, I understand that. Can we do a Zoom session? Well, you know, I'm on the road all the time. My wife is this. All right. Great. Can we just talk on the phone?

Don't give up, teachers. If they can't come in, we're in the system age right now where you can do Zoom. We're on a Zoom call right now. You could do telephone. I could put you on speakerphone while I'm doing 50 million things. I could put an AirPod in my phone and talk to you at the same time. Teachers, make the effort.

Mr. And Mrs. Owens, this can't wait because your child has a gift. They're also having-- they're having disadvantages in my classroom, and I want to make sure that I'm doing my job by supporting you guys at home, so I need to talk to you.

Whoa. They're serious about my child. I'm going to listen. OK, yeah. I'm going to make that effort. Let's make this meeting happen. Teachers, you've got to do that.

And don't be-- don't be uncomfortable doing that because I think the biggest thing right now is that we think that that's not in our place. That's not in our job description. It's in your job description to love on people. That's outside of work. That's something that you've got to go that extra mile for.

But once again, we're talking about two different things, apples and oranges. Are you built with it, or aren't you? And I know that you are because you chose this as your why. You chose the reason to educate younger children, younger adults because you love these kids. You love the possibility of adding value to someone's life. So you have that ability. You've just now got to get out your feelings and you've got to speak up about it, you know?

Without communication, effective communication between home and school, parents often feel like their feelings are not validated or acknowledged. It's right there. It is right there.

I can sit there and come up to the school and curse every teacher out about Shayne. Oh, well, you didn't do this, and you didn't do that, and how he failed in gym, he comes prepared and everything like this. Whoa, whoa, whoa, whoa, whoa. Mr. Owens, whoa, whoa. Whoa. I'm sorry. I thought you knew what was going on throughout the year. No, I'm busy working. All I know is I send my son to school. You guys say he's doing a good job, and that's it.

No. Teachers, if Shayne went to school and he's doing something that's incorrect, I don't need you to overlook it because he has autism. Oh, well, it's OK because he just doesn't know. No. He needs to know right from wrong. Right from wrong.

I need you to call me and say, hey, Mr. Owens, Shayne is having a difficulty. He's around these students that exhibit a lot of bad behaviors, and I'm kind of worried about if Shayne will actually pick up on those bad behaviors. He's already missing about four assignments. Oh, whoa, four assignments? Yes. Four assignments. Oh, well, he told me he was up to speed on his homework. I need to talk to him.

Take that extra step. Be that grandmother. Be that aunt. Be that uncle to that child in that family. Hey, listen. I'm worried about your child. This is what's going on with them. I just wanted to communicate with them. Is there anything I can do on my end?

Thank you for letting me know. I will talk to Shayne, and can I follow up with you afterwards? That's building that bridge. We don't see that too often because now we're always worried about offending somebody.

We need to get out of our feelings. You need to get out your feelings. You are there for a why. We have a child that we love, and we want to make sure for those eight or whatever so hours that they're at school that they are being loved and cared for by professionals who think that that is their child or their family member themselves. We've got to work together, and the only way is because open communications.

Parents, once again, diverting back to parents, we shouldn't be going to meetings and seeing teachers and saying handshakes or hi, and then that's it. Hey, Mr. Rob. This is my telephone number. This is my email address. You can contact me anytime. Give that information. Let them know that the doors are open.

Now we charge the educational team to be like, OK, great. This is my information too. Now we have open communication. There shouldn't be anything lost, but that takes both sides. So as much as I want to say, teachers, you've got to be here maybe 60%, 70%. No. 50/50. Everybody has to meet. That's the part of the two sides of the team. We have to meet together. We have to sit down.

Due to all of this, we have increasing lawsuits. We have, once again, children going out of county to go to school, or we have a higher factor of truancy. I'm not sending my child to school because they just don't understand them.

What are you doing, Mom or Dad? Do you really think this is conducive to them actually being a productive member of society down the line? Oh, but maybe you forgot that you are not going to be here forever. You're not. That's just the reality of it. You're not.

So how are you helping your child actually make sure that they are being self-sufficient in society? By keeping them home because you think the teacher is not caring for your child? Or maybe it's the fact that there is a miscommunication between both of you guys, and maybe it just means that everybody on the educational support teams need to get a date together, and everybody needs to sit down at the table and come up with some tools and some plans. Maybe it's just that. Maybe I'm wrong. But I'm giving you something to think about.

So if that's you, if you're listening, if you're a teacher or maybe you're a parent-- and maybe if you're a parent you cursed out that teacher, I think you might want to give them an email or a call back and apologize and explain where your frustration's at. But let's set a date for a meeting so everybody can sit down.

And if you're a teacher and you've been ignoring the many requests for a parent for a meeting, or maybe you got a hateful email or maybe a call from a parent because you just didn't have the supports you needed in order to educate that child or help that family out, maybe give them a call and say, hey, you know what? I think we got off on the wrong foot. Is there a possibility we can meet and we can chat?

I assure you that this will clear up a lot of things, and you will actually start enjoying what you're doing. You'll actually start engaging with that child and that family a whole lot more. And they will actually start seeing you as a resource, which is the most powerful thing in the autism community.

Last but not least, health care providers. This is my favorite because this is me. This is what I'm talking about now. So I remember somebody came over to my board, and they worked for this prestigious place. I heard the name before. And they're like, oh, great. Can you tell me what this board is about?

And I'm like, yeah, you're not doing your job. And they were like, what? Like, [LAUGHS] you're not doing your job. This is the reason why I'm here. We are missing the mark.

Connecting with our communities and the stakeholders in it, working collaboratively with community-based organizations that service and educate families, hiring of autistic and/or caregivers in prominent positions within our infrastructure, me. Educating workshops for the community, hosting them versus tabling at them.

Here's a big one. Being a human versus just being a provider. Where's your humility at? Where did it go? Did it go when you walked across that stage and you got your diploma? You just left the humility there? It was like, oh, I'm a doctor now. I don't need to do that. I can do it behind closed doors, but I don't need to show that.

You're not a corrections officer. And even when you are a corrections officer, you still have to treat people like human beings, all right? Taking the white coaf off-- white coat off, relating to patients and their family on a first name basis, being inquisitive about the loved one's progress outside of the office as caregiver, or offer resources regarding transition planning. That's that extra mile that I'm talking about. We are missing the mark.

My director, when I was going for this job, I interviewed everybody in our infrastructure. He was the last one. He said, Jamiel, I know what you've been doing from the past up to now. You are the right man for the job.

He said, we are in the middle of Southwest Philadelphia, University City, West Philadelphia, and quite frankly, we don't do anything for our communities. And I said, I appreciate you actually saying that because you really don't.

There are so many different daycares. There are so many different health organizations, miniature health organizations, smaller, I should say, within the area, the capacity area of CHOP that we don't even know about. And they are struggling because they have our loved ones and children just like them within their program.

Why are we doing this? We're building up towers. We've got all the shiny new buildings. We've got all of that. But yet, we don't have a personal connection with our community. Why is that?

Quite frankly, because we're only around when the cameras make us look good, and that's not what community engagement is about. Community engagement is about being there when there's no cameras there. Community engagement is about sitting at the table and having a parent tell you, well, you guys did wrong by my family, and saying, I'm sorry about our organization. How can I help you? How can we make this up to you? How can we make this connection better?

That's what community engagement is about, and that's what I do. This is the reason why they hired me. Yes, they hired a Black man to connect with the Black and Brown community. Yes, that is a given. You can look at me and say, OK, that's the given.

But they hired me for a little bit more because they know that my passion and my purpose for this is to integrate all communities. It don't matter from what ethnic background you represent. It's to integrate all communities for inclusivity throughout the entire city.

That is my sole goal, and that starts with going out into the field and engaging with families, taking that information to my infrastructure. Hey, you know, this research opportunity, it doesn't work for this population. Maybe we should start talking about different workshops for this population.

I can be at a bunch of organizations, having events. I can have a table set up. That's not getting me anywhere. That's piggybacking. I'm piggybacking off of what another organization is doing. CHOP has hundreds of millions of dollars. We're a nonprofit organization.

Why aren't we building with community organizations to host our own events, to let people know that we're here? We have lost that connection, but we are willing to bring it back. Why aren't we doing that? You can't tell me we ain't got no money. I understand that, but you can't tell me.

And here's the proof. The proof is right here. See these flyers right here? All of these events I have implemented. These are my events that cost nothing, nothing at all. Everybody that participate in these events didn't have to pay anything. We didn't have to pay anything out. We just had to come together for the families and the communities that we want to serve and say, hey, we're here together. Now we need you to come meet us.

Autism Town Hall. This is with the Philadelphia Sheriff's Department. Costs nothing. Autism Town Hall, Norristown Police Department. Costs nothing. My father's-- Autism Fathers Meetup. Don't cost anything.

We actually give stuff out to the fathers. You come, we want to feed you. We want to hear your heart, and we want to give you some materials to go home for at least so you can say to your partner, hey, babe. I'm trying. This is all the information I got from this fathers meeting. Now I'm understanding why you're so gung ho about finding strategies and different things for my child.

Now I understand it. I appreciate you. Thank you. But at the same token, now Mom can say, I appreciate you. Thank you for now understanding me and acknowledging me. Costs nothing for this.

But yet, a lot of health organizations see that it's too costly to participate in things like this. This is where we're missing the mark. This is where that family engagement is actually falling off.

And I didn't even touch on transition to adulthood. Oh, that's a whole nother topic. That's a whole nother slide that we can talk about employers not really investing in our autistic adults.

My son Shayne right now-- I'm going to tell you this and then I'm going to conclude-- my son Shayne is so anxious to work. 16, he knows he's going to get his working papers. I am scared half to death, and the reason why is because employers do not know the substantial value in really employing autistic individuals.

For one, they'll have the best workers ever. Never late. Always productive. Always wanting to satisfy. That's what we look for as employers. We want that. We want integrity. And our autistic individuals, they have that naturally in them.

But they won't invest with the proper training. They won't find someone who can be a specialized trainer for individuals with disabilities. No. They want to follow the ADA Act. They want to get those people in there. They want to have a 25-year-old autistic male or female working for $13 an hour and only schedule them for two days. That's a problem. Who is living off of $13 an hour and only working 16 hours a week? Let me know. No one.

So we have to reinvest. We have to tell these employers. We have to educate everybody. And this is where organizations like CHOP will hire someone like me in their infrastructure to go out into the community and effectively educate and also be educated about, what are the needs for the autism community or those communities alike with intellectual disability, any type of disability?

It's all about outreach. Outreach is the cornerstone to any successful nonprofit health care organization, even for educational support team. Well, how's outreach for a school? Outreach is annual cleanups. Outreach is free workshops to invite parents in neighborhood.

Free first aid and CPR. Come on in to the school. Get certified on us. We're not charging you. Come on to see where your child actually spends majority of their day, and get certified while you're doing that. These are the most creative things that you can come up with, and they're very, very simple.

So while I end with all this-- I know it was a mouthful. This is the same intensity that I was talking to these professionals down in Nashville. I don't hold anything back because if I hold anything back, I'm just next in line to the average person who's just saying, yeah, it's a shame, but oh, well. There's nothing I can do, and just continue on with just providing for my son.

I made a pact back in 2014 when I started The Ausome Show. I made a pact to educate everybody, to push the narrative for every single person. Because when I look at your child, I look at my son Shayne. And I do not tell my son no a lot. I don't tell him no. I always push the envelope for him. So I'm going to do the same for other children and other families alike.

So that is it. I hope you guys enjoyed my spiel and my long-winded talking. But if you have any questions, please, please don't be afraid to ask questions, and let's open up the floor.

STACY PHILLIPS: This is Stacy. Thank you, Jamiel. That was great. I wish your poster was a little bigger so I could really see it. My vision's not great. But I'm wondering, Jessica and Jamiel, if you're willing to share those items with us, then I will make sure everybody that registered or that watches the recorded session has access to the presentation and your poster, if that's OK.

JESSICA LAX: Yep. Great.

JAMIEL OWENS: Of course.

STACY PHILLIPS: I'm going to drop the link in the chat to fill out the evaluation. And if anybody has a question, now would be definitely the time to ask, and we really appreciate you being here.