Confronting 'That Autism Thing'

MADELEINE BRAND, host:

This is Day to Day. I'm Madeleine Brand.

ALEX CHADWICK, host:

I'm Alex Chadwick.

Far more children are being diagnosed with autism today than 25 years ago, and no one knows exactly why. It could be better reporting? Or a real surge in the number of cases? Or some combination?

BRAND: One of those children is Gibson Brown. He was born nearly four months premature, and he endured a number of life-threatening complications.

CHADWICK: Gibson is three now. Independent produces Dan Collison and Beth Meister have been following his family for reports they call the "Autism Chronicles." Today part one, Gibson's mother Katrina talks about her son's diagnoses and her reaction.

Ms. KATRINA BROWN (Mother of an Autistic Child): He came home on oxygen, and he came home on a feeding pump and on numerous medications. And he was weaned off all that over time, and so we kind of let go of our worries and were thinking, OK, he is doing fine. But when his first birthday came around, and he wasn't pointing, and he wasn't saying mama, and he wasn't saying daddy, and he wasn't waving goodbye. And even though everyday I'd sing "head, shoulders, knees, and toes" he wasn't pointing to those things.

Ms. BROWN: (Singing) Gibby, head, shoulders knees and - knees and...

Ms. BROWN: I started to get really worried, but people would say to me, well, he was a premature baby, so adjust his age. He's not really one, yet. Or he's a boy, now, they're slower to speak. Oh, he is going to start speaking in sentences. You know I'd be reassured, even though, in my heart I was really uncomfortable, and I was really panicky. And I started to look up speech delays on the internet, and you get ten thousand things, and it all has to do with autism. My idea of an autistic child was "Rain Man."

Mr. DUSTIN HOFFMAN (Actor, Rain Man): (As Raymond Babbitt) I don't know. That's a driver.

Mr. TOM CRUISE (Actor, Rain Man): (As Charlie Babbitt) That's good. Come on. Come on.

Ms. BROWN: Didn't want to be held. Didn't want to be touched. Screamed and cried, kicked and screamed, you know, shook their hands, turned around in circles. That is what I thought, at first.

Mr. CRUISE: (As Charlie Babbitt) You and I are going to get on this plane. ..TEXT: Mr. HOFFMAN: (As Raymond Babbitt): No.

(Soundbite of screaming)

Mr. CRUISE: (As Charlie Babbitt) Whoa, whoa.

Ms. BROWN: I would read through the list of warning signs, and I could say, well, he doesn't do this, but he does do this. And it was like three-fourths, no and one fourth, yes because he loved being held. He wasn't a temper-tantrum thrower. So I would just, kind of, talk myself out of it a little bit, and then I would talk with other people. I talked with the pediatrician and none of them really seemed to feel like that fit him. And so I was relieved.

You want to do Pattycake? Pattycake, Pattycake, bakersman.

I think for the longest time, we just kept thinking, well, the light is going to come on, and it's going to be OK and you know, everything else worked out, and we were hoping. But at the same time, I knew something was wrong. You could not attribute it to his adjusted age anymore.

And mark it with a - and mark it with a...

Nobody gives you a handbook with that says, your child has autism, this is what you do. I talked to my sister, who is a nurse, and she said, you know what, just have a neurologist look at him. He was a little over two and a half. And at the point that we had that appointment, we were seeing progress, so I really wasn't expecting anything except for them to say, he just needs more time. And we go in there, and this neurologist comes right at him with these toys that he wasn't interested in. He would not even look at this doctor at all. Even things that he could do, he didn't even do it. And I remember this doctor saying, well, more than likely he is mentally retarded, and you'll just have to change your expectations and just shattered my heart. And so I'm in this office with tears down my face and just feeling like I want to crawl in a hole and just not ever come out and take my child with me and just get out of this world. We went back to this occupational therapist, and she said, I do not agree at all. Your child has made wonderful progress. He's shown us that he can learn. He shows us everyday he is willing to work. But in the back of my mind, that seed had been planted, and I had to fight it every single day.

(Soundbite of music)

Ms. BROWN: I took him to see Santa last year, and I was trying to get him to smile. And he wouldn't look at the Santa at all, and all he wanted to do was play with his beard. And the Santa, the mall Santa to me said, does he have that autism thing. I just remember saying no, he doesn't have autism and took him off his lap. But now looking back, I can find humor in that, I guess, because there are so many other people that I asked, and they said no, and somehow Santa - I guess if you want a diagnosis, ask him.

Finally, someone said to me, have you ever had him taken to someone to see if he actually has autism. I said no, who do you take him to? I didn't even know there were doctors that did that. That's when she said, well, I know there's a doctor in Ann Arbor. His name is Dr. Solomon, and I know there's a waiting list six months or more. And of course, I called, and it was six months or more. And I just started crying uncontrollably on the phone, and I think the secretary just took pity on me and said well, can you get here on Friday at eight o'clock in the morning? I said yes. This was on a Tuesday, it was the day before the Fourth of July, and those four days were hell for me. I thought, he's going to say there's no hope for your child, you know, get over it and make the best of it. And we got there, and it was the complete opposite experience.

Dr. RICK SOLOMON (Ann Arbor Center for Developmental and Behavioral Pediatrics): OK, this is - I was afraid of that. That's the way to start the tape here. He just dumped all the blocks out, that will keep him busy for a while. So this is Dr. Solomon, Rick Solomon I'm going to make a tape on Gibson Brown, it's...

Ms. BROWN: He looked at our child. He played with him. He initiated things with him. He got in his face. He got at his level. I just immediately, even before he said anything, I was so comforted because I thought, OK, he's seeing our child how he really is.

Dr. SOLOMON: It's my style, after I'm done interviewing a family and playing with the child to then tape my recommendations.

Ms. BROWN: Then he started off the tape by saying that your child very clearly has significant language delays.

Dr. SOLOMON: That, there's no question, he's three years old, but he does have words, and he does have words before the age of three...

Ms. BROWN: He likes to play by himself. Even though he can be social, he prefers to isolate himself.

Dr. SOLOMON: And he's got a number of dominating interests.

Ms. BROWN: He likes to play with certain things and not others, and he'll play with those certain things over and over and over again.

Dr. SOLOMON: I'm sorry to say, but there's no doubt in my mind that he's on the autistic spectrum. Now, I think it's mild, I do think it's mild.

Ms. BROWN: And then at that point he said, now let me stop the tape.

Dr. SOLOMON: Now let me just stop there, OK.

When I make a diagnosis of autism, generally I do stop the tape and wait for the parents' reaction. I often apologize to them for giving them bad news because I don't consider it good news.

Ms. BROWN: And I'm waiting for him to say more. I mean, my mouth is open, and I'm waiting for him to say, your child is mentally retarded and has no future and will not be in a regular first grade classroom. And we're not saying anything. And he's looking at us, and we're looking at him, and I said, well, is there more? And he said, well, no. And I said, we're relieved, and I think he about fell out of his chair. I don't think he was expecting us to say that.

Dr. SOLOMON: It takes a lot of strength to recognize that there is something that's not right with your child's development and to be able to come in and really take the risk of finding out that something really is wrong and that something needs to be done.

Ms. BROWN: He gave us a tape, and I listened to it probably a hundred times. I listen to it on the way to work almost every day.

Dr. SOLOMON: And so there's reason to be very hopefully and to have high expectations. You should not lower your expectations here.

Ms. BROWN: We've always know we were going to have to work hard with him. We've always known that, with our son it's not the way a typical child develops. But to know that someone else besides us believes in him, someone who has devoted his life to children like him, to hear that there are things that we can do for him to help him, I can handle that so much better. There's hope, and I definitely needed to hear that.

CHADWICK: There's a photo slide show of Gibson Brown and his family at our website npr.org. The Autism Chronicles are produced by Dan Collison and Elizabeth Meister for Long Haul Productions.

BRAND: And tomorrow in part two of our story, Dan and Elizabeth will follow Gibson in a special public preschool.

CHADWICK: And there's more to come on Day to Day after this. Transcript provided by NPR, Copyright NPR.