August 8 - August 14, 1996 / Volume V, No. 31

Phyllis and I talked for nearly four hours about her family's experience treating Tommy, who was diagnosed with autism last April and started the IEI program last August. Tommy's progress was extraordinarily fast - he made it to the transition stage in only nine months. Following are excerpts from the interview.

The Beginning

Tommy was always a bizarre child. He opened and closed doors all the time, turned the lights on and off repeatedly. He didn't like other kids much. We figured he just needed more personal space, but we didn't think anything was wrong - everyone's got their own personality. I grew up in Spenard, and everybody's house is full of misbehaving kids.

By 18 months, though, he was a handful. Subconsciously, we stopped visiting people because he was such a problem.

It got really concrete when we went to Hawaii. He wouldn't let any women touch him, and only hand-holding by men. We figured maybe he was too busy to be touched, but he got violent about it - he didn't want you to go near him.

On the way back in the plane, the noise of the engine got to him and he stood up, moaning with the noise and waving both arms up and down. We joked that he was praying to the volcano god as we left.

We called him 'Tas', for the Tasmanian Devil. He didn't talk much, and we figured he was the last kid, didn't get enough time, and we blamed ourselves.

The Diagnosis

Then I had a day care interview with a mother with an autistic kid, and it sounded so much like Tommy.

The things he said seemed so smart. When we went to the store, he knew exactly how much everything cost, and he'd call out the numbers. But he didn't learn his name forever. We thought he might be deaf, but the hearing tests all came back fine. Just little, odd things.

Then we got him screened out when he was about two and a half. He screened out as a nine month-old. You couldn't really see it in real life, but when they started analyzing him, we could. We realized there was something major wrong with him and took him to a neurological pediatrician, Dr. Brennan. He was really nice, just played with him - you wouldn't even know he was a doctor.

And suddenly, we had lots of errands. Contacting state agencies, the School District, the UAP program, State Div. of Mental Health, looking for funding...

I always wanted to fix broken kids, but I never thought I'd have one. But we're Mormons, and we believe we lived in Heaven before we got here. Earth time is short, and you can endure anything for the short time you're here. We just knew this was our chore on earth.

Initial Treatment

There was a waiting list at UAP, but Dr. Brennan said we could pull him out of [autism] with the right techniques - and that there was a fixed window of opportunity. For days, I had nightmares of windows closing, hourglasses running out.

When we were on the wait list, we were losing more of him every day. We felt helpless in the face of professionals with lots of big words. If they just published a small handbook of resources and suggested things to do in the interim, so much could be accomplished, but there seems to be this all-or-nothing philosophy.

In the beginning, we were so afraid we'd make him worse, we were afraid to act. Knowledge is always power. I got over 20 books on the subject, hooked up with the Autism Research Institute, and just started learning all I could.

When we started treatment, he got a lot worse before he got better. He was burning himself on the stove, smiling - and he'd scream if we pulled him away. It really stressed him out. And he was excellent at slipping out of the house. We'd install alarms and security measures, but he was always able to disable them and escape

He hated to be held, he was an incredibly violent child. We forcibly held him in a way he couldn't fight back. He'd scream for hours, sweat pouring out of his body, until he fell asleep. I cried for hours, too, sometimes as loud as him. I tell other parents, 'cry if you have to, but he can't go through life without wanting to be touched.'

We put him on megadoses of vitamins. Magnesium, B6, DMG; and got him a speech therapist. Within one week, he started saying what he wanted - basic needs, food needs.

We tried giving him sensory stimulation, like putting him in warm water and pouring cold water over him. Then he got ill with chicken pox and other complications. But through this, he was talking more and more.

I used to spend hours holding him, talking to him, telling him he needed to tell me what to do for him, so that we could do the right thing. The more we aimed for that, the farther we got.

The IEI Program

Then we started the UAP program. Its mission is to get as much in as fast as possible. I thought of it like a computer. You need to install the operating system before you can run any software. UAP program installs the Windows program. From there, we can install the other software.

We assembled a team of about 11 friends, neighbors and church people. We did our own thing. Our team was different from most. Lots of junior high kids, who play trucks better than adults. Autistic people don't like new things. You have to ignore that, and give him lots of teachers and broad experience.

But finding volunteers has been really hard. We're advertising our kids like merchandise. We're friends with a lots of other parents with autistic kids, but we're competing with each other. Who's got the better ad, the better kid?

The program has all this 'no' in it. We didn't want him to learn by rote - we wanted him to think it out. We give him lots of reasons and options, and build that into this lessons.

The UAP researchers call them trials, but that sounded like a courtroom. We called them table games and set up a room for it. It's real rote, real behavior mod - pure behavior mod. He needed to be told what to do.

He takes things very concrete, very literal. In the UAP program, there's a strict formula. You present something and then the answer, "What's this... say cow." But they can be a little heavy-handed. With the puzzle, if they put the piece in the wrong place, you're supposed to take it out of their hand and say 'No' forcefully. That seems silly, and it was upsetting Tommy. I decided instead to just tell him turn the piece around, or help him put it in the right place.

In the beginning, UAP controlled it all. They hoped to spare us the stress, but there's no way around it. Either you're gonna have this incredibly stressful program in your house for a while, or you'll have a really strange kid the rest of your life.

We went through the program really fast. Now, he's in 'transition', and the window closes at five or six, so we're really hopeful. UAP doesn't have a complete answer for us, but they're supportive. They look at our videos of Tommy, and consult with us.

Beyond The IEI Program - Finalizing Transition

Now, he can tell us what's wrong. He started telling us his ears hurt, and we made sure to give him lots of options.

Tommy is a very visual learner, and he's good at rules. He's so mathematical - we tell him, "#1 you'll do this, #2 you'll do that for five minutes, and #3... We've got the classroom downstairs, and he's teaching himself to read, but I worry he may never get phonics and just see the words literally, so I'm working hard on that this summer with him.

He understands he has autism, but he understands it like a three-year old. They call some of the things they do 'stems' and one of Tommy's was clicking. He started talking in clicks and stuff. We told him, 'kids don't play with kids who click,' and that worked really well. We try to give him lots of reasons for the things we tell him.

We point everything out, and tell him he has autism. He had a problem with some children who made sounds that hurt his ears. He thought they were doing it on purpose, but when we explained that nobody's ears hurt but his, and that if he only told them his ears hurt, they'd stop - he picked it up. Showing him the benefits of communication is so important. We take him on tours to all sorts of places around town. He wants to know everything, and we try to show him directly.

To live with autism, you just have to think about it. It's like dyslexia - you have to accommodate for yourself. It's Tommy's job to adjust to the world, not the other way round.

Tommy's lost the ability to tune out. He can't go away anymore and check out - the ability's gone. But he still gets fixed on things. Autistic people have no idea they're so different. Most are relieved people forced them to come out of it. Inside, they want to socialize, but can't find their way from point A to point B.

The transition stage is similar to lots of other special needs kids, but more hands-on. We've had lots of support from professional moms and licensed professionals. It's really a great team - balanced, diverse and talented.

I have a feeling he'll hit regular Kindergarten. He's done everything required except his socializing skills. He's got a huge vocabulary; cognitively, he's already above kindergarten; he's got reading and writing, manageable behavior. I feel strongly that he'll be able to do whatever he wants. It's such a battle, but the outcome is so good, it's worth the fight.

The School District

You can't rely on the school district to give you a fair shake. The law says the School District has to provide an appropriate education, but what's that? Lots of IEI parents have pulled their kids out of the district's special ed programs.

I know a parent who told the teacher her autistic kid needed lots of visuals to be able to learn. She offered to make all of them, and ensured they'd be good for the whole class. The teacher said 'no,' because it didn't fit into her teaching style.

In the special ed program, the philosophy is 'let them be, make them feel safe.' For some developmental disabilities, that's OK, but with autism, we've got to force them to engage people. Otherwise, they'll build more walls, more roadblocks to their development.

Autistic kids need to be with regular kids. So many kids I know were placed in special ed and regressed. Special ed says if a kid sits alone in a corner and plays quietly with toys, that's okay. But not for an autistic child - they need to be engaged, pushed into interaction. It's important to get him playing with other kids with a full-time coach. I stopped working so I could go to school with him.

He was also really good at imitation. He could get your facial features, how you slouch, the expressions on your face. When we were thinking about special ed, we thought mimicking would be a problem. We didn't want him coming home and having cerebral palsy. Insurance doesn't really cover anything relating to autism, but we got a speech therapist through the school district. And we found the preschool at the King Career Center, an Early Childhood Education laboratory for the high schools. They've been really good.

I hate when they take your choices away. It's not fair - suddenly, 10,000 doors just closed because of this word. But when the school says, 'Oh, he'll never do that,' it just raises my motivation to do it.

Rather than get a school district aide, I'll probably go to kindergarten with him and act as a volunteer aid for the whole class. I don't go with him to Sunday school anymore, but I do sit outside and listen.

Politics and Funding

Whenever I look at autism programs, I wonder what's the motivation? UAP's focus is, 'does it work,' they're trying to prove their research. The school district is, I don't know, maybe federal funding, or justifying their programs. My motivation is Tommy solely.

Everyone has their pet program, and wants to say, "We have the answer, they don't." I don't know about UAP, but certainly the district is inflexible. I don't know if it's about funding or what, but the solution should be a blend of programs. It's a big picture, and the program plays a part. But there's behavior mod, sensory issues, social stuff, speech therapy...

I'm sick of hearing about funding problems. We've just got to deal with it on our own. If all the funding dried up, we'd still be able to take care of Tommy.

It doesn't take a lot of money to deal with this if you do it right. There's been barely any public assistance for us. But the assistance from our church has been great. We found a friend who came to spend special time with Katie, and we get lots of stuff from the church - food, toys. But so many parents don't have access to the kind of support we did.

We're forming our own support group outside of UAP with other parents to support, educate and empower each other. It's not so important to have people babysit and protect us, 'cause in the end, we're the ones who have to stand alone. It's really nice to be able to talk to these people as consultants, but in the end, it's most important to empower yourself.

We spend so much time looking for answers and funding sources, instead of being the answer ourselves. There are a lot of parents on the waiting list whose children are just slipping away.