Simon (name changed to protect anonymity) was a former high school student of mine who requested a dual interview with his mother so others could better understand him and those similarly challenged. See here for the first part of our two-part interview: https://medium.com/@joeleisenberg/my-challenge-a-conversation-about-life-as-a-high-functioning-autistic-adult-37ceaeee4fc4
Simon’s mother sat with him during the interview, which was conducted in July of 2010, and I spoke to her as well. For her part, she discussed her perspective of “Simon’s” disability, and his issues with violence, which was something she said they were both “working on.”
She will be known simply as Mom moving forward. Though I anticipate some backlash over this two-part interview, to be clear both son and mother wanted to set a permanent record together. The interview that follows will get uncomfortable at times, especially during its sections of violence and family dynamics. The mother told me prior to recording that she wanted to let other mothers of autistic children know they are not alone in their challenges, and she — like her son — needed someone to realize this task. She wanted her son to remain alongside her when she discussed the violence. For the son’s part, he did not visibly react at all to her words. I was worried about an aftermath but was introduced first to another hired advocate that had been working with them both, who assured me of steps taken to ensure the mother’s safety.
Further, the mother stressed that it was important to discuss her familial dysfunction, which she believed could be a lesson as to how not to respond when raising a child with such a disability. She insisted that such dysfunction fed upon the challenge of raising an autistic son, which in turn fed the dysfunction.
Over the next two years until we lost contact, I was told there were no further violent incidents.
To the mother’s interview …
Joel: First question: At what age did you feel that your son was born different?
Mom: In utero. I had a very bad, nagging feeling, especially in my fifth month of pregnancy, that either something was very wrong or something was about to go very wrong. First, the pregnancy was far enough along by then to where having an abortion was out of the question. Also, I found out at that time that Simon’s half-sister —different mother, same father — was a paranoid schizophrenic. She had her first psychotic break when I was five months pregnant, which led me to believe I was going to have an issue with my own child.
Joel: When Simon was born, what were the early symptoms?
Mom: Well, he had a very large head. And that concerned the doctors, so I would take him in every two weeks to have his head measured. That was the first thing, like, right away. His head was too large, and it had fluid in it. But that went on for awhile. And they didn’t do too much.
Also, when Simon was starting, needing to make milestones, he wasn’t. And they were beginning to tell me, “Well, he’s not doing those things. He’s not doing that.” And I was, at that point, I was in complete denial, because, well, just because that’s what you do. You think, Oh, my baby’s fine, you know, and I had a mother, and she was also that way. And —
Joel: Your mother was autistic?
Mom: No, I wasn’t clear with you. My mother just didn’t want to believe there was anything wrong with her grandson. And she used to go to appointments with him, and I finally I started noticing that she was actually lying, and I said this isn’t going to help Simon any if she started lying about the things he does at home supposedly, as far as milestones and normal development. It just wasn’t true.
So I said not to come any longer, and that of course made her very angry. But I thought that was probably my only way to help him. You know, I knew I’d have to be truthful with the professionals.
Simon’s father, on his end, he didn’t really want to be involved in the situation. His daughter was a paranoid schizophrenic, and he was focusing a lot of time and energy on her because his ex-wife just left them both. So he was responsible for her and he just didn’t want this other thing like right after. He didn’t want responsibility for it.
Drama maybe to your readers, but understand drama matters to those going through it, especially when disability is involved. My son was born autistic. Denying the challenges is morally wrong.
Joel: So some of the milestones that Simon had missed as he was getting older included what?
Mom: Well, you know, he walked late. He talked late. He was really four when he spoke. And that’s autism, and that’s the difference between autism and Asperger’s Syndrome, and because he looks Asperger’s — because he’s so high functioning — it’s a criteria. You read your Diagnostic and Statistical Manual. That is the difference. There has to be a speech delay, and in Asperger’s they say there is no significant speech delay. So he’s autistic, just very high functioning.
Joel: Okay. Tell me about the violence.
Mom: Well, when he was still a baby, really, Simon tightened up his little fists and when I was carrying him he punched me in the face. That’s what I remember when I used to carry him around. So there was something there, and I knew that early.
Understand, also, at age one he had an MRI for his brain. They wanted to look into it, and they found an abnormality in his frontal lobe. But they told me — the doctors at NPI, who are fine doctors — the abnormality was an area which affected speech, growth, motor abilities, fine motor abilities, and behavior. And they said there’s a possibility of violence as he aged. And all of it came true.
Joel: So he basically was acting on instinct, Simon? He was pure id? He wasn’t really able to control his tendencies … Is that correct?
Mom: That’s correct. And he still is. No matter what he sounds like, he still is.
Joel: What do you attribute that to? Because he sounds very articulate ...
Mom: He is articulate.
Joel: But he seems like a deep thinker. He seems like he comes across when he talks to you that he thinks before he says something, and he thinks of his actions, but you’re still saying he is still pure id.
Mom: Well, he always wants to present that he’s a very smart.
Joel: A good front?
Mom: That’s one of his big obsessions and, you know, sometimes he gets delusional. I’ve seen him when he gets really psychotic. He starts saying some really grandiose things. But underlying that, he wants people to think that he’s a really smart guy so he stops to think before he speaks. And he knows that, although there is a speech problem because he has aphasia and that he might need to stop and think to say the word correctly. So there’s a lot of, you know, he has to be very careful.
Joel: So at home he’s really basically himself, and it’s to the outside world he’s basically presenting.
Mom: That’s true. That’s true. So he can try and impress me, too, believe me.
Joel: Right. How does a mom deal with this? How does a mom, knowing that her son is different, how does a mom deal with it? What’s your typical day-to-day?
Mom: Well, it’s painful, being honest. I love my son. Let me be clear and say that first. I love him. When all these problems were beginning to happen, when they did try something at NPI, somebody sat down and said to me, “Well, now you’re going to have to be his advocate, okay?” So I took a very strong advocate role for him. I started becoming a social worker, you know, just sit on the phone until I got something, you know. So I was always in the role of advocate. At first I was making sure that all that needed to be in place was in place, and then also I was over-protective because I didn’t want to have him have to feel the pain that he was different. But he did feel the pain.
I was always protecting him. I was always just lifting him up: “You can do anything, regardless,” I’d tell him. And that’s where it turned into, “Oh, I can do anything.” Yeah, it got all twisted into that, because I so didn’t want him to feel bad, you know, because of his disabilities. And he has his share of disabilities.
As he got older, I had to go through tough love periods where I had to look after my own survival first, based on some violent outbursts. I had to then basically go after and try to save him. And I did. I had to face disapproval from my father, who had taken him away when I had wanted him to go back to a group home but something better than where he’d been before.
What my dad did, though, was he literally ran off with him. He got the sheriff to drive them to a motel, and he stayed with Simon for a year, and Simon abused him physically and verbally for that year until finally my dad called me and said, “I can’t take it anymore. Do something.”
So I manipulated it. I got Simon in the hospital once they came back — got him to stay two weeks — and convinced him that once someone is in the hospital for two weeks, they can be conserved. I was very heavy-handed with the psychiatrist, and even managed to have the regional center call and support me that he could be conserved, and that’s what happened. I took his rights away, and once he was out of the regional hospital he was put in what they call an IMD, which is long-term psych care.
And he was there for three years.
Joel: He checked himself out when he was eighteen?
Mom: He checked himself out. A year after, I had him hospitalized for three more years. He was out of control and very, very violent.
Joel: You told me earlier he’d beat you up and he’d beat himself up. Correct?
Mom: Oh, my God, every day. I mean, he couldn’t go to school without kicking me and sitting on my face every day. He went to a private school when he was released from the hospital, where you both met.
Joel: Now the timeline is clear.
Mom: Until then he was hitting me all the time. And one time when he was in school, he head-banged me against the wall and my eye split open and bruised, and I looked like a fighter or something. Had a concussion.
My father didn’t want to take me to the hospital, because then they would inquire about Simon and that possibly could get them both into legal trouble based on how he basically kidnapped Simon before. So Simon just went to school the next day like nothing happened, and absolutely no guilt, nothing. I was left there by — I was living with my sister and my father, and I couldn’t really walk around too much because I was dizzy from the concussion. I had double vision. And all I remember is my sister saying, “Look at all that blood.” I had to go clean up the blood from one end of the house to my bedroom. A lot of blood, you know.
Nobody came and gave me any water. Nobody came and gave me any food. And I was just left for dead. So I received no help from my sister, and no help from my father.
The only person who would come around would be Simon. He say, “I’m not nobody,” and then he’d look at me and add, “Oh, God, you look so awful.” And he did that. And he meant it. It was all very painful, and very confusing because I couldn’t seem to ever really reach him and yet he was my son.
Another really bad problem was when I would, when he was thirteen and I was just resting in bed, just be resting. We hadn’t had an argument or anything. He just came at me. I could feel his hands on my throat choking me, and I — because I was half asleep, I didn’t scream or anything — it totally took me by surprise. And I didn’t make any noise, and I just remember him pressing harder and harder, and I went out. I went out awhile, and then somehow … I guess Simon was making noise, because my sister came in and she started screaming, and she said, “Oh, my God, you’re blue!”
She was able to pull him off, which was the first help I’d received from her. And I remember asking her, “Why did you bother bringing me back?” I actually said, “It was so nice where I was headed, and you brought me back to this.”
What could she do? I realized at that moment why her hands were tied, why she didn’t help all that much. Like I found out later with my dad, it wasn’t that she didn’t want to help more. She told me it was her honest fear back then for her own life.
But I remember that day clearly. I was in a better place, you know, if only for a minute. That day, I looked at death as a wonderful thing.
Joel: And you told me you actually did try to take your life?
Mom: I overdosed.
Joel: Because of everything that was going on?
Mom: Yeah. Last year was the worst incident. I was at the hospital, again due to my injuries from Simon. I ended up in County because I didn’t have insurance, and I was in a holding cell. I never got a bed. I had gone in, and they had asked me what my history of mental disorders were.
I was honest. The pregnancy, the autism, the violence … What I had developed wasn’t chemical, but I had been suffering from clinical depression since Simon’s birth. I said, “Depression and anxiety. And I know you’re going to freak out, but some people think I have borderline personality disorder.” So they hear anything regarding “personality disorder” and they think ‘MPS,’ as the only thing they can come up with from TV and the movies is multiple personality disorder. So they chart that down. I started getting treated for multiple personality disorder.
They would not give me any of my proper medications — my psych meds, and I have a lot of them — so basically I went through withdrawal for three days, especially with the Effexor. If you’re off Effexor, you actually begin to hallucinate. But they attributed that to my “insanity,” which they considered was me going into different personalities.
And then my father called, and the psychiatrist — who never even walked in to see me, he never really met me — said to him, “Your daughter has at least six to eight different personalities.” And my father believed him, because the doctor told him that. And that was all he needed to hear. They treated me foolishly, and he thought they were doing right by me. I told them, “I’m a social worker. You better watch what you’re doing.”
They didn’t believe it. The staff just laughed, because it was this very delusional thing that I was actually a social worker, you know. So, anyway, yeah, there’s a book right there, what happens to people in those places. It was so pathetic.
Thinking about all that now, that experience actually brought me closer to my son in a way.
Joel: I appreciate your honesty,
Mom: Um, I know we agreed to this and all, but are we going on this with my real name?
Joel: If you don’t want to, I won’t.
Mom: I don’t want it to, because I have a career. Remember, I’m still a social worker —
Joel: No, no, I understand. What I can do is I can anonymize you as well.
Mom: Thank you.
Joel: I could use “Mom.”
Mom: Yeah, that’s better, because I’m still in the field. Even though I have these problems, I’m still able to work, so …
Joel: No problem. I understand. You will be anonymous.
Mom: Thank you.
Joel: I’d like to move forward. I’m noticing something. What I’m seeing here is throughout all of this, you know, your son being born autistic, you having subsequent battles with depression … what I’m seeing is that you both stuck together throughout everything.
Mom: And that’s what I’d like for people to know. That’s what I meant about getting closer in a way. In a strange way that few can understand. He’ll always be my son.
Joel: You’ve had times where you were separated, and he was in the hospital and you were dealing with your issues, but you’ve stuck together. You’re his mother, and he’s again living with you now. There’s something to be said for that.
Mom: Well, there is something to be said to that, and I think on his part it’s very hard for him to lose or to make a change. And me as well. So it would be very hard for him if he wasn’t living with me. Not that he loves me or likes me, which he does but that’s not the immediate point. It’s that it would just be very hard for him to accept a change.
Joel: You love him.
Mom: Oh, I love him very much.
Joel: Despite everything.
Mom: I love him very much. There are things about him I really don’t like. I really don’t like. In fact, I’ve never met a person with such unlikable types of behavior. These kids can be horrific. I came from the hospital, and all he had to talk about was how fat I got and that what somebody else said about me, just negative. He has never in his life ever said, “How are you, Mom?” I don’t think he has the capacity to.
Joel: Where do you see him in five years?
Mom: In five years?
Joel: Yeah. He says wants to build and program computers. Do you think he’ll do it?
Mom: You know what? It could go two ways very easily. He’s got a good chance of being some guy on social security the rest of his life with no job. A pretty good shot at that. Now, there may be ways that he can work with this, with his disabilities, with the computers but I’m not sure.
I’ve been trying to teach him how to go about going to college. At first he didn’t listen to me, then he learned. Because I know quite a bit of how to do it. I mean, I have problems processing information. I had to find ways where I could learn or get past these hurdles, so I could finish each class and go to the next class and finally ended up at SC, finally ended up graduating with a 3.8 GPA.
It was hard for me to maintain, because the last year he was in and out of the hospital, and my mother was dying, and I was taking care of both of them. And I did it. But it was a strategy, you know. I developed a strategy, and I’m trying to teach him that. What type of classes to take is part.
When he started college, oh, he did great. Just great and I’m proud of him. He did good in his math, like he went and took a class that was so advanced, just because he could. I know it was probably the wrong thing to do. He didn’t listen to me at first. He was being grandiose again. He started listening to me a little bit after. I figured we can start him, like he’s got me thinking about English for him. Now, he’s going to place high on his English placement. No, he’s not going to go to English 1, he’s going to go to the one below English 1, refresh all that he’s learned. Go to his next step. He’s got a chance, but it’s going to be me mentoring him: the person he sometimes hates the most. And the person he thinks is so stupid, because I went into social work and only “stupid women become social workers” according to my son.
You understand that I could have had a profession where I could have made money. First, there’s no money in social work. I did it because I wanted to help people. He didn’t get that. He’s like, “Wow, she’s stupid.”
And so, anyway, he seems to be slowly turning this around as he’s maturing, and for now he’s listening to me more because he sees, through all the trauma, that I made it work. And he thinks he can do it too. My way.
My strategies worked for me. I grew up thinking I was not very intelligent. I had similar insecurities as Simon. I never considered that until recently, but the truth is I knew nothing. People would say, “God, you’re so smart.” I didn’t know. I thought, Oh, there’s something wrong with them. I don’t know what they are talking about. I didn’t get my degree until my forties. You know, I did that, and I proved my methods can work.
Unfortunately, my mother was the only one who supported my thoughts at the time, and when I did finally graduate, she was in a nursing home. I said, “Mom, I got my Master’s Degree.” She supported me, but my dad, my sister, and Simon, there wasn’t a congratulations among any of them.
Joel: Let me ask you something different. What is the best part of having a son that’s different?
Mom: The best part of him? Let me think. Well, I think it teaches you about life. I mean, it teaches you about all kinds of people. It gives you more empathy for all kinds of people. It also teaches you how to accomplish things. If somebody closes a door on you, you go find another door. So it has helped me to grow as a person. Maybe not in a pleasant way, but I learned.
Simon is not like a developmentally disabled child that’s still loving. If you hug Simon, he’s stiff as a board. I never got any of that feeling back from him. In fact, that kind of thing has to do with his disability. If you’re down or something, they can be affectionate, and, you know, this is a thing with him which has been very difficult. He can show love, but then he corrects himself like he’s doing something wrong. It’s a very different, different illness. They’re very unable to connect with other people. It’s like on the negative side. They don’t understand that if they give you a concussion that there’s anything wrong with it. That’s the emotion that is more common. Anger. They act on the anger, and move on. At least that’s one mother’s experience.
Joel: Is Simon your only child?
Joel: Last question: Where do you see yourself in five years?
Mom: Well, if I survive … I’m still a social worker, and I’m also doing consulting work now. I don’t see a future with a man or a marriage. I don’t think that’s going to happen. I wish now, when I was younger, that probably would have been more of a reality but I just was so focused on Simon that it would have interfered with me taking care of him.
Joel: Do you see Simon meeting somebody down the future, or you don’t think he’ll ever —
Mom: No, I don’t. I wish he would. But I wouldn’t want him to reproduce. Let me share something with you. I found out later, and I sort of always realized this, I always had a very strange sister, his aunt. She was recently diagnosed, after all this time, with Asperger’s Syndrome. And now she and Simon are very close. They understand each other. And they love to say, well, they’re the ones who are smart, and I’m the one who’s dumb. Yeah. Asperger’s, because she’s odd enough not to make it, but she’s real smart. She never made it. She’s comfort in a way for him. If he doesn’t make it, it’s because like her he’s “too smart.”
Joel: Do you think Simon will make it?
At that, Mom leaned over to her son and asked for his opinion.
Simon: If I want it badly enough.
Mom: There’s your answer. It’s exactly what I would have said to you.