Autism has been with us always, but now at a more accelerated rate just in the last fifty years, and especially the last 25 years or so.
If you are a parent, you probably know of some other family who has a child with Autism, ADHD, cognitive learning disabilities, Downs Syndrome, or other disorders that place a child under the umbrella of "special services."
Perhaps that other family is your own.
Autism, unlike the other neurological problems, is found in an alarming 1 in 150 births. Higher for boys with some estimates at 1 in 92 births. No one knows why.
Days of Our Lives has been on television for over 40 years. The soap's head writer, Dena Higley, has opened up her own personal life to use as background for the characters of Abe and Lexie, who will deal with an autistic child of their own.
Dena Higley
On the June 24 episode of NBC's daytime drama “Days of our Lives” Higley's insight will guide the DOOL story as she will introduce a young actor to portray the son of Commissioner Abe Caver and Dr. Lexie Carver: Theo, their diagnosed son.
Higley has galvanized the producers and network brass at NBC, now collaborating with the nation's leading autism advocacy organization, Autism Speaks, to help bring a lifeline of hope and useful information during the course of the storyline to parents walking this fire too.
Dr. Lexie Carver (Renee Jones) and Commissioner Abe Carver (James Reynolds), are told their 3-year-old son, Theo, has autism. The news of Theo's diagnosis is a process for the couple, and go through the various emotional states any parent does when they are give the news their child will not be the perfect picture or idea they thought would play out, that the game plan for their family has been altered.
Dena Higleys' son, Connor, was diagnosed at age three. Now 19 years old, he recently graduated from high school. Higley blogs on the NBC site about her and her husband's personal struggles, frustrations, expense and triumphs of raising a son with autism, plus three other children.
Higley notes: “Their pain, their struggle -- and ultimately, their ability to find life-affirming hope in the midst of learning how to live day to day with this disability. This is a personal story for me...as my husband and I have walked in the shoes Abe and Lexie are now about to walk in."
Monsters and Critics joined several other journalists and spoke to Days of our Lives head writer Dena Higley, and actors Renee Jones and James Reynolds.
Will you attribute the cause of this to vaccines or do you have another reason why you think that Renee’s son is going to have autism?
Dena Higley: I am not - I have spoken at considerable length with Autism Speaks and we’ve come to the conclusion that just introducing an autistic child and dealing with the grief factor, and how to deal with an autistic child, is a huge enough fight for us to take at this point.
So we’re not going to get into causality, at least as far as we’ve written. I haven’t even really revved up the story as much as I want to. There’s so much to say and do.
So to get into vaccines or other environmental issues or clusters, or DNA, or any of that - the brain scanning, any of that, we’re really - as far as my eye can see the story going, that’s really not on the landscape at this point.
He probably will be higher functioning. As I am going out and as I’m getting to know this population again -- the new generation because my son is 19 now -- I do see that the predominant kids are higher functioning.
So yes because it is dramatically more interesting. We had already established that this character had some language. So we couldn’t go back and have him not talk anymore.
That was before we had decided to do the autism storyline. So we recast the part and sort of tried to work within the framework of what we had. So he does have some language. That in itself makes him high-end functioning.
Just having language at that early age. It’s not appropriate language, but it’s language.
Renee, Have you done any research on what it’s like to be the mother of an autistic child? Did you read Jenny’s book?
Renee Jones: I’ve seen Jenny in interviews talking about it and it’s so interesting. I remember hearing her say in one interview that when she got the diagnosis, she said I died. And the way that she said it, it just hit me so hard.
So, I study her. I study her emotions and what she’s going through, and just talking to Dena about her son and what she’s been going through, so - because I’m totally taking this all from an emotional point of view.
I’m not getting into the statistics and all that other stuff, either. So just the different levels, different phases that you go through from hearing the diagnosis to how that makes you feel, to the loss, to the grief and then into getting into action and wanting to help your child as much as you can.
Dena, why did you choose Renee and Jim’s characters to go through this? What kind of effect will this have on their marriage?
Dena Higley: Well their marriage has gone through so much and I felt like when I came on as the writer, that there was some of their past that had not been addressed - Lexie’s infidelity.
And there was just obviously some cracks in their marriage that had kind of been semi super glued with just like okay, well that with that story and this is this story without really ever having any closure.
So first we wanted to tackle the fact that this is not a completely healthy marriage. Then on top of that they find out that their son is disabled, which oftentimes doesn’t help anything.
We’re really focusing on what is this doing to the couple of Abe and Lexie. They, to me, were the perfect candidates because they’re both professionals. They’re both can-do, take charge, problem-solving people who are now being given a problem they can’t solve.
And I think that that’s the thing that I felt after my initial grief of feeling that death, that little death that Jenny McCarthy talks about. After you feel that death, you have to move on and she seems like a person who is sort of an A-type personality and I know I am, and Lexie is, and Abe is.
And so what do - since you’re a proactive person by nature, what do you do and where do you go? And then you sort of jump into things too fast and then you realize you haven’t really finished processing your grief.
I wanted to show all that and I thought that Abe and Lexie were the perfect couple for that and I thought this is - these are two actors that can sell this story. Oh my gosh, it’s going to be so amazing.
And they were just tailor-made for it. And I didn’t have to position them for it. I didn’t have to lay in six months of getting everybody ready. It just was there for the taking and I just think it’s a perfect mix and match.
But it also introduces conflict into the marriage without introducing say a rival romantic interest for either of them, which we’ve kind of seen done a lot on soaps.
But a couple imploding from the inside because of inside circumstances in their own family unit is realistic, dramatic and really compelling, I think.
As this story progresses, will we be seeing them in conflict over ways in which to treat their son’s condition?
Dena Higley: Absolutely. And I got a call from one of my script writers because I had written a couple of themes out and they called me and said did you and (Mark) have this fight - because they knew me and they knew my husband.
And they knew - and I said yeah, it’s almost - and it’s probably been 15 years since we had that fight and I was surprised how I could access it so quickly. I obviously had no closure there.
But yeah, I mean, word for word some of the disagreements that my husband and I have had in the past, , I just put those words in Abe’s mouth and I was - like I said in one of my other things that I wrote, I said there’s a lot of me in Lexie at this point and there’s a lot of (Mark) in Abe.
And, not that every man deals with this the same way, but there is a tendency for certain personalities to want everything to be all right and there’s no point in panicking.
They see maybe the other person’s point of view as panicking when really the other person is just trying to take control of the situation. So there’s a lot of disconnect where you start labeling your partner’s behavior when it really doesn’t deserve to be labeled.
But you can’t help it. And that’s where the conflict comes in.
James, I’d like to get your opinions on or your thoughts on how you deal with this child and this situation?
James Reynolds: Well Michael, it’s interesting hearing Dena talk about it because Abe obviously does have that aspect of him that wants to sort of assume everything is going to be all right.
I think we did a scene just yesterday in which he expresses a real desire for Theo to be a kid - just be a kid and have some time to play and whether these therapies that Lexie wants to do are going to interfere in that.
And it sets up a great conflict between the two of them. I’m really enjoying that part of it. I think that actually might be my reaction if - whether it’s right or wrong, in going over those scenes as - , I think I might actually react that way initially.
Renee and I have spoken about this at great length and doing a story like this that’s so important, that means so much to so many people is something that we’re both just really, really pleased and honored to do.
How hard was it for you to convince producers to do an Autism storyline?
Dena Higley: It was quite the opposite. NBC was so out there and just talking about things that were topical and what could we do. And autism was mentioned, and I said well I, , I know a lot about autism. And they said really because I hadn’t been on the show very long.
And so I told them a little bit about my situation and they said well we should do a story about that. And I had - I would never had pushed this story uninvited simply because, , as a head writer you try to, , not - I don’t want to use this as a personal, , dumping block for my own agendas.
But - so this isn’t even really something that I feel like - actually, it’s the opposite. I was - I started to be concerned about my son’s privacy issues and then it occurred to me as NBC and Sony and (Corday) gave me a lot of pats on the back and said you can do this -- because I knew I was going to have to go and dredge up some pretty painful stuff -- that (Connor) was going to have to dredge up some painful stuff and did we really want to go through this?
And the conclusion that we came to was there was no choice. We had to go through this. 1 out of every 150 births now an autistic child is born. How can we stay silent? How can we say what, (Mark) and I did everything we could for (Connor) and we’re done?
That’s ridiculous. And here I am in this position with this great show, with this great history of the show and the impact it can have on people. I would go to bed at night and go I have to do this. It became an itch that I had to scratch.
I’m trying to be very conscious of bringing this story along slowly, letting the audience sort of watch it marinate, to savor and then we’re really -- as we go from the summer into the fall -- going to really amp up a lot of air time, a lot of aspects of it.
I was talking to Renee and James earlier and ideas that went - the things that you can do with this storyline went nuts. So it was the opposite of hard. It was the easiest thing I’ve ever have ever talked about in a (clips) meeting.
When the time is right, when the climate of your audience is correct and you have great actors ready to take on the role, oh my gosh, it’s just - it just happens. It’s like falling off a log. It couldn’t have been easier.
What would you like to say to other moms who may be watching the show - an audience whose kids have been affected by Autism?
Dena Higley: First, through the characters of Lexie and Abe, I want to just give them a sense of validity. Like if they’re sad, you have a right to be sad. If you’re pissed, you have a right to be pissed. If you’re angry, you have a right to be angry.
But Abe and Lexie are not the kind of people that are going to live there forever. So yes, we validate every emotion that they’re possibly feeling and then we’re saying don’t give up on hope.
Don’t dismiss your child as not being a miracle in the process. I’m starting to tear up. Just - you have to know this little child is going to do amazing, miraculous things and change your life forever and you will be a better person. That’s what I want them to know.
I used to take my son places and look at other kids and feel sorry that they didn’t see three or four miracles a day.
My child responding to his name, my child making eye contact, my child little by little chipping away at that wall that was between us - everyday I would see something new.
And then the day we - next day we’d have some setbacks. Sure, it wasn’t like this steady progression. But I just want to tell those people that they’re living a life they would never have stood in line and bought a ticket for, but that is so worthwhile and so deep and rich, and meaningful.
What’s your master goal if you had one by introducing this storyline?
Dena Higley: The master goal is to just get it out there, that there is this whole population that exists that lives with us. And I would love to raise up a generation of people who embraced the (differentness) of these kids.
These kids don’t sit still in class the same way but what, these kids are being mainstreamed. And if you don’t have a kid who has autism, you will have a kid who has an autistic kid in your - in their class.
And how does your child behave with that child and how can that child - how can your child benefit from knowing an autistic child or two? That’s what I want. I just want the sense of we can’t pretend they’re not out there anymore.
They’re here. They’re with us. They add value. Embrace them. Embrace the autistic kids that you’re going to find in your lives now because it’s a growing population and we isolate them or we love on them. It’s a choice and Days of our Lives is choosing love.
James - like what did you have to do in order to get in character for this role?
James Reynolds: Well it’s interesting - when I first found out I was going to do this role, I think like anyone else I went to the Internet first and began to do a lot of research on the Internet.
But I also have three very close friends - in fact, my best friend from college has a child who is autistic. So I’ve been on the phone a lot and have spoken to them.
And I have to say, Dena, many things you’ve said today are things that they’ve talked to me about. And it’s interesting hearing you talk about them as well now. And it’s that personal relationship that I think is important, that I allow Abe to bring to this story.
Dena Higley: I just want to say something on - in defense of Abe because it’s not my point of view when I’m writing the scenes.
But my father was so interesting - I called him up and I said, , we just got back from UCLA and we got a diagnosis. (Connor) is autistic and my father said no he’s not. And I said do you know what autism is? And he said no.
And I said well then how do know he’s not? Because he’s just not. And from that day forward, my father never treated him - no one ever treated my son in his world better than my father.
So he pretended to be in denial, but I don’t think he really was. He just wasn’t - his way was just to not know, everybody’s got to stop panicking. I want to shake him because he wasn’t the one that drove 15 hours to therapy and spent hundreds of millions of dollars, and sat in the sandbox and said sand over and over again for six hours until my son repeated it.
He didn’t do any of that, but in some way, he looks at (Connor) now and says I told you everything was going to be okay. so there’s something to not everybody panicking and freaking out a lot.
There’s something that we want of Abe in our lives. He’s not in denial the way my father was. He accepts it and he wants the therapy and the help, and to do whatever he can for his son. But there’s something comforting about a man who - this is my son, dammit, and I will not let everything not be all right for him.
We may want to slam his head in the car door but we love him for it. But I mean, I just think - that’s to me - I’ve been writing for Abe for 20 years.
So we haven’t changed the character of Abe for this storyline. He’s just moving into this storyline, the same character. He’s not going to change who he is.
With all the concern about vaccines, are you going to introduce the pros and cons into the storylines and the two different camps that sort of are a little bit at war about this issue?
Dena Higley: At this time we’re not planning to simply because it would overshadow the story that we do have in place. I’ll never say never. It could happen. But at this point, there’s so much story to tell just about the impact that autism has on this one family, we don’t have enough airtime in the world to tell this story, let alone it being one of four or five stories in a day. And the summer is sort of weird anyway and the Olympics sort of, , impede our ability to tell stories.
So we’ve got a big thing to chew in small periods of time so that’s really my focus right now and I - it’s very hard for me not to be drawn into the controversy, but that’s just not where our head is at, at this point.
Yeah, I know it’s hard because Lexie is a doctor but we’re just not going to go there for awhile.
Renee and James, I want to know what was the most surprising thing that you learned about autism upon researching it for this storyline.
Renee Jones: The most surprising thing? I didn’t come in with any type of preconception for anything to surprise me. I just came into it with an open heart to listen and to learn.
And it’s so interesting because about six months leading up to me finding out that this storyline was coming up, every time I would see any type of interview on autism, parents talking about it, I would always just stop and watch.
I don’t have children. I didn’t know anyone who has an autistic child, but something about it always compelled me to watch. And it was interesting watching different parents’ take on what they were going through.
Some of the parents that I saw talking about it acted or felt like it was all about them and just what they’re going through, and their pain. And in some were at different stages of not going through that in the stage of let’s take care of this situation.
So it was interesting for me to watch different people and how each person handled this crisis in their lives differently as either a victim which a lot of people, you should be for a minute as you’re going through this or as okay I’ve gone through the grief and the pain and the hurt, and the loss and like Dena said, it will always be there but I’m not going to let that be my badge.
That’s - I’m not going to let that be who defines - what defines who I am. I’m going to look at my child not as my child is autistic, but that my child is this beautiful, loving soul who happens to have autism. It’s a big difference.
Don’t define him or her as the illness. So I think that’s what I’m learning more as I’m going on with this. It’s such a journey for me and it’s just opening me up to learning so much about it that I just never even fathomed.
I’m growing as a person learning more - the more that I’m learning about it.
James, what about for you? Was there anything just really stunning or surprising that you found out from the script or your friends who have kids who are autistic?
James Reynolds: Well I think for me, because I’ve known people over the years - as I said, I’ve got three friends, three couples that I’ve known very, very well over the years and have seen them deal with this and talked about it to them as they’ve dealt with it so the aspect of the struggle was something that I was aware of.
I think the cold, hard facts were a little surprising - the 1 in 150. Those are difficult things to comprehend when those - just those figures are right there in front of you.
But I found it interesting over the years how each of these couples have dealt with it. One of them didn’t survive as a couple. Two actually seemed to be stronger for it as a couple.
And so watching their struggle over the last several years and their children - one is actually in his Twenties, but most are teenagers, the other two. And that has really been something that has helped me in dealing with this story, is talking to them and hearing what they have gone through on a daily basis.
Dena, how does (Connor) feel about this whole storyline coming up on the soap and everything?
Dena Higley: (Connor) - he’s such a funny kid. you have to have several sessions with him about something.
We sit him down and his dad told him about the facts of life, he was like what? And then he went to school and they taught it there and he was like what? And then so we got a note sent home, so we explained it again to him.
Each time he seemed more shocked than the time before, like it was all new information. So I had a couple of conversations with him saying we’re going to do an autistic storyline on Days of our Lives and people are asking me about you, and could I talk about you?
He said sure and I said would you ever want to talk about it? And he said sure. And then the other day I showed him - we had a little thing in USA Today and I showed it to him and he’s like what, what is this?
I said remember, we talked about it? And he said well I didn’t know you were going to put my name in print. And I said, yeah, I sort of did. So we talked about it a long time and I told him this is an opportunity for him to share his story and that’s all anybody was really asking him to do.
I mean, he felt like, I think at first that he was supposed to be somebody he wasn’t and I said no, just be yourself. And, you’re great and just there’s these little kids that don’t really have role models and you can be that for them.
And he, at that point, thought that was really cool. So now he’s jazzed that he can just say I did this and here’s my football pictures and here’s my track pictures, and here’s my graduation picture. And you can do all that, too.
Your parents are going to have to spend a fortune, but but it can happen. And when (Connor) was growing up there was nobody for us to - who had gone before and blazed trails. I mean, there were people who had written books and had done fairly well -- Temple Grandin and Sean Barron, and some other people -- who had written books and really done well with their autism, but in a very non-(Connor) like way.
(Connor), obviously wasn’t going to write a book someday.
So what does that look like? We didn’t know. And I think (Connor) can put himself out there, and with pride, and say what, if I can do all these things -- especially to this population of kids who are struggling with autism but have some tools and some instruments to work with and some language, some - fewer sensory problem -- then yeah, you can - the sky is the limit for you.
And it’s just - it’s going to be a really remarkable thing for him. It’s going to be the best thing that could’ve happened to my son. He’s ready to not think about numero uno for awhile.
I wish I could teach this to my teenage daughter but that’s a whole different subject.
Abe and Lexie’s son in Days of our Lives, how old is he supposed to be and have you like been training the child actor who is playing him to accept this role?
Dena Higley: We cast a wonderful little actor, he’s five years old., so he acts - it’s not even really a matter of training. He just - he’s given the direction and he does it and he’s amazing. James and Renee can tell you more.
So, it happens. We play with age a lot and we needed to make him - we couldn’t make him any younger because that would be ludicrous and we couldn’t make him any older because that would just be ridiculous also.
He’s three and we sort of backtracked a little bit, but Lexie had been noticing some behavior problems and Abe had, too. But once again, when you have a boy people will feed into whatever you need to hear.
He’s a boy. That’s why he’s talking later. He’s into other things. He’s just, it’s - there’s a lot of different reasons why you don’t necessarily go to that worst case scenario.
And until you hear the A word, you are sure it’s something else. So yes, so he’s around three and that’s sort of where we are and that’s the focus that we’re going to have, is on a kid who has some language but doesn’t really have appropriate language at all.
Would you consider celebrity guests like Jenny McCarthy or Doug Flutie who have autistic children come on and kind of share information with the audience that way?
Dena Higley: We’re at the stage where we are just so slammed for time right now. We need all the Abe/Lexie time we can get. It’s precious real estate. Eventually I would love to have Holly Robinson Peete or yeah, somebody else come on the show who is very proactive.
But that’s, once again, further down the line when we have more of a rhythm on this storyline. So eventually that would be lovely. As far as to having the other - another kid, it’s definitely eventually going to be a discussion.
Actually the opposite thing happens with parents like this because, for whatever reason -- I’m not going to get into it -- there’s a genetic component to autism. So it’s not unusual to have two children with autism.
In fact, I know quite a few people who do. So that’s something you don’t need. So it’s not like you would have the same moral discussion of our son was killed in a car accident, can we replace him with another kid?
That’s - you can’t that kind of conversation when you’re dealing with autism because you may just be taking on another autistic kid. So in this population, with this group, this family group, the tendency is to say that’s it.
We’ve got all we can handle, and not have other kids or you have a kid and - before you get a diagnosis on the first one, which is what we did. And then you either worry or you don’t.
So no, it’s a conversation that’s wonderful to have and dramatic, but it’s not really an option.
Are there statistics on marriages that don’t survive something like this?
Dena Higley: There’s no hard statistics, but it’s bleak. It’s extremely bleak.
Could we see possibly one of them turning to someone else for support that could threaten the marriage?
Dena Higley: I think they turn to other people, not in a sexual way but in a way that they’re looking for allies. And that’s not healthy. You should just dig in and work on finding common ground. But instead they retreat a little bit. We’ll see that, but not in a sexual way. That’s - they have enough going on.
What you’re planning to do in terms of resources with Autism Speaks after the show?
Dena Higley: At this point, we’re kind of hoping that the story in and of itself will get people wanting to get on the web and find out some things. But we do have a connection with Autism Speaks on my blog, on our website and I think there’s a lot of ways, if you have the smallest bit of interest to, , find some resources.
We don’t have any plans at this time to do a PSA, but that’s certainly something we could (bumper) at the end of the show eventually.
Are you going to be blogging about this on your blog?
Dena Higley: Oh, I have been. LINK
Your son, is he mainstreamed totally? Does he still have effects from this?
Dena Higley: He is...People always see autistic. He comes up with different challenges all the time as he breaks through more and more, out of the world of autism.
He still says some pretty random things on occasion that - , he’s connecting the dots in his brain, but not necessarily - so he can be kind of random in his humor.
He needs a little more of a focus in a classroom situation. He prefers a smaller classroom situation. He prefers to have a tutor reinforce afterwards. There’s some things he’s just got to break through and he knows that, and he knows how to empower himself now.
So I’ve stepped back and he knows what he needs to do, and how to ask for help. That’s the main thing. These kids don’t know when they need help and how to ask for it. So he’s a tremendous young man.
He was voted friendliest in his class as a senior which is huge for an autistic kid. And he’s just - , he - there’s nothing that he hasn’t - a goal he hasn’t given himself he hasn’t done. So I’m just excited to see what the future holds for him.
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