Remembering Bridget Mary McAllister: A Conversation with Annie Scheumbauer

Annie and Bridget

Bridget Mary McAllister (1987–2004) had a talent for poetry, writing, painting, as well as many other passions. When she was seven, she was diagnosed with Asperger syndrome and a sensory integration disorder. She died in her sleep at the age of 17. Upon her passing, her parents decided to donate her brain to the Autism Tissue Program, now Autism BrainNet.

We recently spoke with Bridget’s mother, Annie Scheumbauer, to learn about her daughter’s life and what led their family to make the decision to support autism research through the gift of brain donation.

The interview has been edited for clarity and brevity.

By Lilliam Acosta-Sanchez and Serena Bianchi

Can you tell us about Bridget?
Bridget was born when I was 38. I had such joy in having her because I’d been trying to have a baby for so long. She was really anticipated and really loved. She was very healthy, very “normal.” She met all of her developmental milestones, you know, all the way through walking, talking. She was very stubborn, and when she would make up her mind not to do anything, there was hardly anything we could do to change her mind.

The real headache came when we tried to toilet train her because she would have nothing to do with it. We went to see a clinical psychologist, and she diagnosed her with a defiant oppositional behavior and sensory integration issues. She recommended occupational therapy and gave us some strategies. She was about four when we got her toilet trained.

That was one of the first clues we had. Then the preschool teachers began to be really concerned about her lack of social interaction. So we started having her tested for autism.

She was very loving and affectionate. She communicated really well with my husband and me and with her brother, who was born three and a half years after her. She was very, very close to him.

They sent us to see so many people. She did not like doctors. She was very outspoken, and she would tell people, “Sorry,” you know, “I’m not doing that.”

I took her to the children’s hospital here in St. Louis, Missouri. She was seen by a child psychiatrist, who wouldn’t listen to anything anecdotal that I would tell him; his main idea was that we needed to put her on medication. They put her on Prozac when she was six or seven, but she started to get very agitated. Then they took her off of that, and they put her on Paxil, which was terrible. She gained so much weight in one year. It was just, like, she blew up. So they took her off Paxil for a while.

That was really hard for me. I think back on that and think about, oh my God, what torture must that have been for her to go through. She had a rough time without any drugs. She was really easily frustrated by too much sensory information; she would act out or throw things. So I agreed to put her back on drugs, on Celexa and eventually Lexapro.

Bridget Mary McAllister

It’s been a while since Bridget’s passing. What led you to make the decision to donate to Autism BrainNet?
It was on Memorial Day that she died. She was at my sister’s house because my sister had a swimming pool. My sister would invite her over to her house every year on Memorial Day so she could be the first person in the pool every year — it was their little tradition. She was in the pool all weekend, and we were all coming out on Memorial Day to meet up with them, swim and have a picnic.

She passed away in her sleep. Because she passed away not at her home, the police were there, and the paramedics were there too. They told my sister she had to call me and get me there, so she called and wanted to talk to my husband — not me.

But my son answered the phone, and I said, “Who’s on the phone?” My son said, “It’s aunt M., and she wants to talk to dad.” And I was right there, so I said, “Well, I can talk to her.” He handed me the phone, and she said, “There’s something wrong with Bridget. You have to come out here right away.” And I said, well, “Call an ambulance.” And she said, “I’ve already called the ambulance. They’re here with her.” And she didn’t tell me that she had passed. My husband was in the basement, and I screamed for him downstairs. I sent my son across the street where my brother lives, and I said, “Well, get your uncle to see if he can drive us.” I didn’t think I could drive. I was so upset.

And so, my brother came over, and my husband came up out of the basement. Before he came out to the car, he called my sister back, and she told him that Bridget had passed. When he got out to the car, he told us. I just can remember crying and screaming so much that my son, who was in the front seat of the car kept turning around and saying, “Mom, are you okay? Are you okay?” And I just… I don’t know. You know, I didn’t know.

When we got there, my youngest sister, not the one whose house it was at, who’s a nurse practitioner, met me in the driveway and said, “I just want you to know that it’s the best thing that they couldn’t revive her. Because if they had revived her, she would be on the list for a heart transplant.” And Bridget hated that; she hated being in the hospital. She once made me promise her, “Don’t ever take me back to the hospital.” Because she had these terrible experiences there. And I said, “Well, Bridget, what if you’re sick and dying? Can I take you to the hospital?” And she’d say, “No, I don’t want you to take me.” My sister said, “You just have to focus on that”— that she could not have tolerated being in line for a heart transplant.

They had to do an autopsy on her because of the circumstances of her death. And we wanted to know what had happened. They called our doctor, who is a child psychiatrist in St. Louis, and after one of the first few calls, she asked me if I wanted to donate Bridget’s brain to autism research. She had been sent information from the Autism Tissue Program (editorial note: the Autism Tissue Program was the predecessor of Autism BrainNet). She asked us, “Would we consider that?” And we said, “Of course we would.” We just thought Bridget would have loved that. She liked to say, “I really want to be a success, Mom. I want to be a screenwriter.” I thought that in one way, donating was a token of success for her — that a really prestigious institution wanted to look at her brain cells and maybe help other children.

We waited a long, long time for her autopsy to come back. The diagnosis was a cardiomyopathy, an enlarged heart.

Bridget enjoying painting

What were Bridget’s passions?
Bridget loved painting. As a painter myself, I bought her an easel right away. I used to have a studio in the house, and she would paint along with me. I didn’t really give her any guidance. I just let her paint what she wanted. I saved everything she painted, which is why I was able to include her paintings in the book I have just written about her, Bridget, the Most Beautiful Star in the Sky, which celebrates her art, writing and her life¹.

She loved writing. The eulogy her tutors gave her at the funeral was fabulous. They talked about how she loved Edgar Allan Poe, Thomas Paine and some of her favorite authors. One night, I had asked her “What are you doing upstairs?” And she said, “I’m writing a poem in the style of Thomas Paine.” I turned to my husband, and I said, “Who is Thomas Paine?” I didn’t even know who he was.

She also loved the water. We took her to the local Y, and she met two older women who were both on the synchronized swimming team. She loved watching them, and she could do all those moves. She could go down at the bottom of water, and then her legs would come up real slow. We were really hoping that maybe she could be on this team when she got a little older, but she just wasn’t good with anything organized like that. She had very long hair, and when we went to the pool the first time, they said she had to tie her hair back. She couldn’t tolerate that, and those two older women said, “You know what? If she will only get in the water without her hair tied back, she can go in the pool without her hair tied back.” Now, every time a new lifeguard came on duty, they would blow the whistle, and they would call her over and tell her she had to put her hair back in a ponytail or something. I would have to pull up to the lifeguard and say, “she has been given special permission.” Otherwise, they would’ve kicked her out of the pool, and she would have never had swimming in her life.

We were so grateful for their understanding. Even though they weren’t medical people, they recognized her love for the water and how calming it was for her. After Bridget passed away, so many people at the pool were so sorry. They had enjoyed her being in there, and they said a lot of really nice things to us.

Can you tell us about her educational experience?
She really struggled with school. When she was in preschool, she did fine, except the teachers being hysterical about her lack of peer interaction. I had one teacher chew me out, “You should be so worried about her. She’s never going to have any friends.” I walked out of that parent-teacher conference in tears.
Then, we tried to get her in a private school that was very expensive. They had an interview day when all the kids would come; we went over there early, and we told them, “I don’t know that she’ll be able to do this. It might be too much stimulus. Could you ease back on her and let her just walk around and see things before you start bombarding her with questions?” And they said, “Oh, sure.” And we got there, and they took her and off she went with this group of kids, and she wasn’t good. They called me and told me they were not interested in her. I just cried my eyes out.

I went back to the director of the preschool, who was a pretty good friend of mine through all those years. And she said, “Try to put her in a Catholic school.” The first day I took her there, it was on a Saturday. They were having individual interview days, and she couldn’t handle it. It was too much for her. As we were leaving, the principal said to me, “Is she in preschool?” And I said yes. She said, “Why don’t you just bring her here someday right after preschool, when she’s in a school mode, and the kids will be here, and we can talk to her and interview her then.” They gave her that chance, and she came back and did beautifully, and they let her in. I was grateful.

People can make a big difference.
Yes. She was at Catholic school from kindergarten through third grade. It was a big class, and her classmates were very social. Pajama parties and birthday parties and all this stuff, and she could not do those things. She got left out of a lot of things. The third-grade teachers suggested that she might be better off in a smaller school. It was hurtful to me. But anyway, we transferred her to a school where there were about eight or 10 kids in a class, which was much better for her. But, once again, they didn’t have any kids with autism there. When Bridget graduated, the principal there said to me, “I think we learned more from Bridget than she probably learned from us,” which was true because we just had to advocate, advocate, advocate every day.

One time, some local baseball player had come to their school, and they were trying to make every child participate at batting; she didn’t want any part of it, but they talked her into it. She was swinging, but she didn’t hit any balls. She was so frustrated that she took the bat and threw it away.

They flipped out. They put her in the library and told her to copy the dictionary. When I arrived at the end of that day, I went into the library to find Bridget in tears because she thought they weren’t going to let her out until she copied the dictionary, you know, the whole dictionary. So, I took her out of there and told the principal, “I don’t want her to ever, ever be punished like that again.”

One day, a priest gave her communion at school. In the Catholic church, when they give you communion, you’re supposed to say “Amen.” Bridget knew she was supposed to respond with something, but she couldn’t recall it. So, he gave her the host and said, “Body of Christ,” and she said, “Whatever,” like that. He told the principal that he wasn’t going to give her the sacraments anymore because he didn’t think she understood them. He took her into a room and began asking her questions.

She was very, very interested in Greek and Roman gods. She studied them. She wrote about them. She knew everything about them. He told her to quit reading about them. She told him she didn’t like Jesus. Later, I said to her “Why don’t you like Jesus?” And she said, “Because he always wears red and never wears blue, and blue is my favorite color.” And that was, you know, as theological as the argument was.

We know more about autism today than we did back then. What do you hope we learn from autism research?
I hope you have answers for parents, and I hope you have hope for parents. I hope you have new therapies and treatments because when we first started out, there was really nothing. As a parent, you wonder, was it something I didn’t do, or I did do? And nobody could really give us any answers. It would be a really calming thing for parents — to say to them, you know, “It’s not your fault. This is just a gene that runs in your family.”

I think if there were new treatments or new therapies, that would be such a blessing to parents. It was a rough road with Bridget. I mean, she was fantastic. She was so bright, and she was so creative. She could play by herself for days on end. I would have to say, “Bridget, where are you?” She’d say, “I’m in my room. I’m writing the sequel to a Disney movie,” and I’d say, “Okay.”

Painting and poem by Bridget Mary McAllister

What would you say to other families who may be considering brain donation for research?
I have always felt it was really kind of an honor for Bridget to have her brain be worthy of studying. She had a fabulous brain, and I thought, who wouldn’t want to know how it worked, you know? I just felt it was such a great way to honor her. It’s hard because your child has just died. What do you do first? The first thing we did was to donate her brain. We said, “Donate any organs you can.”

We were just happy that it’s like a part of her life that goes on through that, you know. When you lose a child, you grasp onto how they live on. When somebody my age, or like my mother’s age, passes away, you look backwards, but when a young person dies, you look forward — and with a lot of sorrow. Like, I’m never gonna see her get married. I’m never going to see her have children — never. She’d always say to me, “Mom, I want to live with you all my life.” And I’d say, “That’s fine. You can live with me if you want.” It would be really nice to have her here; she’d be great, great company for me.

This is part of the reason I wrote my book¹ about her, because I really felt people need to know what a success she was. She was so gifted and hardworking. There’s an essay from my son in the book about how she was his role model; he was always impressed of how she had accomplished so much in 17 years — more than people who didn’t have any challenges.

People say to me, “How can you lose a child and go on?” you know, “how can you do that?” First of all, you don’t have a choice. It’s given to you. That’s just what it is. But her spirit was so strong. I feel like she’s still here. In fact, that was one of the first responses I had to her when I saw her after she died. I ran into the room, and I thought that she’s not here, that the spirit was gone. I just try to find ways. She’s very empowering to me; I always tell people this, “If I can lose my daughter and go on, I can do anything. What could be harder?”