‘I Didn’t Know my Father had Autism’ – an Unexpected Bliss Road with Martha Engber, Imi Lo

 

 

 

About the book from Martha Engber:

BLISS ROAD is the memoir of a neurotypical daughter of an undiagnosed Autism Spectrum Disorder parent.  Martha Engber’s honest and moving memoir illuminates the parent-child challenge presented by a neurological condition that affects over 75 million people worldwide.

A hybrid of poetry and essays, Ms. Engber uses personal anecdotes, coupled with historical research and current statistics, to explain the emergence of autism over the last hundred years.

 

After describing the psychological, emotional and social challenges she faced as a child, then as an adult and parent, she explains the method by which she changed her thinking and behavior to both celebrate her parents and heal. 

In this interview, we describe what it was like for Martha to have a father who had undiagnosed autism as a child, what you should do to deal with the loss and trauma if this was your background.

TRANSCRIPT

Imi Lo: Hi Martha. Welcome.

Martha: Yes Imi.

Imi Lo: Thank you for making time to talk to   me.

Martha: Thanks for having me.

Imi Lo: Absolutely.

So, we have-

Martha: Looking forward to this conversation.

Imi Lo: Yeah. So we have you on today because there’s a very special and unique topic that not so lots of people talk about, that you have written about.

But before we dive in, can we just get to know a bit more about you? Tell us about yourself and your story, if that’s okay.

Martha: I live in Northern California, in the San Francisco Bay Area. And originally from Chicago. I have three books out currently, and my memoir that we’ll be talking about today, is Bliss Road. And that will be published in June of this coming year. 

Imi Lo: Congratulations.

Martha: Thank you. Thank you. And that’ll be by . And then I have a historical novel that’ll be published next year as well.

So I’ve been a journalist and also fitness trainer my whole life. The two seem to go together, one.

Imi Lo: Well [inaudible] I don’t think they usually go together.

Martha: No, they definitely don’t. It’s a very odd situation. I tend toward having like ADHD, so the activity allows me to then sit. So I can actually write and think. And that was a pretty pivotal thing I learned about myself when I was a kid. And that helped me process everything we’re going to be talking about today.

Writing was absolutely the only form of therapy that got me through discovering what actually happened to me when I was a kid, and why. And so I can’t advocate that, journaling or writing, enough for people, to help them figure out what might have occurred when they were kids.

Imi Lo: Well that makes a lot of sense. And I agree that it’s very powerful, either through drawing, writing, or movement, for people to process things that has happened to them in the past.

So do you mind telling us a bit more about what you meant when you say things in your past?

MARTHA”S STORY

Martha: Well, if you were to look at my family life just on paper or from pictures, I actually had a very happy family life. I grew up in the Chicago area. My two parents were very loving toward me. And I had two older sisters and we were very close.

We did all the normal things. We looked like a normal family. And I happened to listen to the program in which you were interviewed on the Corrie Lo show, and you also said the same thing. It’s a very normal looking thing.

But there was something that was wrong about the situation. And what eventually we found is that, and my sisters and I put together as our mother was dying… And this is in the year 2012, is that my dad was undiagnosed Asperger’s. And the Asperger’s is a high functioning form of autistic spectrum disorder.

Imi Lo: Yes.

Martha: Yes. And they don’t use Asperger’s anymore in the U.S., but they do in other countries. So it can be a little confusing.

So what that means is my dad had a very normal looking life; a wife, kids, an income, a job, and so forth. But he had a [inaudible].

Imi Lo: What did he do for a living?

Martha: He worked as a systems analyst at the Federal Reserve bank. And so, yes, he was very tech oriented and so forth. And that makes sense because a lot of ASD people really find solace in technical, and things that don’t involve interaction. Because that is of course the problem with ASD, is that, it’s a neurological disorder that disrupts the communication process. And it’s a thing that keeps people from bonding and [inaudible] what you can know.

Imi Lo: Yeah. Well since you have written about it, for people who don’t really… I’m sure people have heard of ASD, and have a sense of what that means, but you seem to have a more deeper understanding of it and an awareness of it’s “official” definition.

WHAT IS ASD?

So can you tell us a bit more about what that is? Are people just wired differently? Is it nature or by nurture?

Martha: People generally bond by commiserating with one another. That means that, and in order to do that, each person has to have the skill of saying, “I have not been in the exact same experience that you have, but I can guess what that’s like. And I know how I feel in that situation, for me. And so I can guess what it’s like for you.” And you say, “Oh, I really appreciate that.” Now that two have connected. That’s how we function, that’s how we bond, that’s how we make friendships.

With a ASD person… The example I use in the book is, if I come to you and say, “My cat died,” and you are an ASD person, you may have had a dog that died, but a dog is different than a cat. So you might say, “Oh, well, do you want to go to the store and pick up some things for the party?”

So there is this big dysfunction. So that the one person is saying, “I just told you this thing that’s very upsetting to me,” but the ASD person didn’t have a way to guess what I was feeling, and therefore they bypassed it.

Imi Lo: Yeah. Yeah.

Martha: And that’s what gets them the… Leads to this, it really is a myth that ASD people are not compassionate. They are, what they’re missing is the clues necessary to interpret normal interactions. [inaudible] the facial, they can’t read the facial. They can’t read the tone of voice. They can’t take one situation and extrapolate, and say, “Oh, I know what that’s like.” And so-

Imi Lo: Even in that example that you’ve just gave me, I can imagine being a child, feeling really hurt on the receiving end of that.

GROWING UP WITH A FATHER WITH ASD

Martha: It’s even more than that. It definitely is, because your emotions are not validated, ever. The person is not going to be the person who says, “Oh, I’m really sad that you’re sad,” or, “I’m sorry that you’re feeling confused.”

The deepest parts of you that need the most help are going completely unaddressed, and they don’t mean to, at all. That’s the whole thing, is there was nothing, there’s no malintent in my dad, at all. He was trying to do the best that he could, but he didn’t have the neurological setup to be able to help me.

And it goes a little bit deeper than that, in that, if you’re a baby and a parent is not giving you this [inaudible] immediate sense of a connection, then that was the most difficult part, is that, it irreparably… Well, no, I shouldn’t say irreparably, because I have actually repaired my self-esteem quite a lot, but it negates your self-esteem.

And that was a very startling thing for me to find, is that I realized that I did not have a self-esteem at all. And it’s a very weird thing for people to think about.

What I had created is this sense of, “If my dad didn’t think I was anything, then I must not be anything.” And I created a social persona that I lived within. So it was a bubble. There was nothing in the middle, but around the exterior I had all the normal appearances. I dressed, and I was able to laugh at jokes, and I felt all that, but I knew that I couldn’t let anybody in because if they came in then they would see there was nothing there.

And it was really shocking to me, the whole process of figuring out what happened when you’re a baby. As early as that, it took about 10 years, took a long time. And I write about it in the book, that feeling. I didn’t know if you wanted me to [inaudible] read that segment, or not.

Imi Lo: How long is it?

Martha: It’s [inaudible].

Imi Lo: I think you should read it. I think you should read it.

Martha: It’s only [inaudible] a minute or so.

Imi Lo: I think you should read it. 

“Envision I’m a baby of between six months and a year old. I’m sitting on a floor in a white walled room. A man stands before me. Beside me is a thing people sit on. I recognize the man. He’s somehow connected to the woman who feeds and dresses me. I don’t have a name for him, or her, or the chair because I’m so young. But I know the man and woman are different from the chair. They’re like me. They move and make noise.

What they do determines how I feel. Happy, scared, sad, or any variety of other emotions for which I have no names. I rely on people’s eyes for clues about whether they’ll be mean or nice to me. That’s why I’m waiting for the man to look at me. I want an idea of what he’ll do. The fact he hasn’t looked at me yet, makes me anxious because it’s unusual.

I’ve noticed when the woman walks in, she looks at me immediately, then she smiles and picks me up. Sometimes she jiggles me around, while making faces, and I feel warm inside, and laugh.

After studying the room, the man lowers his eyes toward me. They reach my head, and without stopping, moved down my face and body, and slides sideways to the chair.

Something happened. I don’t know what. His eyes passed mine with no pause, or smile, or interest. He looks at the chair the same way. If he’s important to me somehow, he must know what’s what. If he treats me like a chair, I must be like a chair, a thing. No worse, no better.”

Imi Lo: Wow. Very powerful stuff. Can you expand on that with words?

Martha: The idea is that you get a parent… As I was researching for the book, I found a study by a University of Washington team of researchers, who found that a child’s self-esteem is developed by the age of five. So that means everything that happens before you have the words for it, or the verbal, informs your self-esteem by that time.

Imi Lo: Yeah.

Martha: So kids of parents who have ASD that is undiagnosed, have no chance. [inaudible] that’s what it feels like.

Imi Lo: What the developmental psychologists found, is that you need mirroring to form your self-esteem, and to know who you are in the world, and to learn to regulate your emotions.

And exactly what you’re saying, is these kids are deprived of that. And they don’t even know. They don’t even know. They just know that when they looked at their parents, they look away, or they never get the feedback that they’re expecting or needed.

Martha: That’s correct. That’s correct.

And the thing with my dad that was so difficult is that, there was no Asperger’s or a diagnosis until 1994. And he was born in the 1930s. So there was no name for it. My mother had no name for it. She just knew he was really quirky. We just knew he was quirky. We thought he was normal, Dad. We had nothing to compare his behavior with.

And this goes to the point we were making, right before I read this segment, is that, when I was researching this, there are literally hundreds of books written by autistic people, for autistic people, parents who are caregiving for autistic kids. It’s about autism research. But there is nothing based for the research of the neurotypical children of ASD parents. [inaudible] I found six articles total, no statistics, nothing.

And you figure there are 75 million people worldwide, that’s an estimate, who are ASD. And likely much higher than that. But they are not getting the assessment they need. And especially females, apparently the assessment process is highly oriented toward discovering male ASD people, whereas females go undetected often.

WHAT SHOULD YOU DO?

Imi Lo: So if someone suspect that their parents might be on the spectrum and that explains their suffering for all these years, where do you point them to? What should they do?

Martha: Well, that is the phenomenon that we’re at now, is [inaudible] that-

Imi Lo: What sign should they look out for?

Martha: I would say that if they suspect their person is autistic, depending on their relationship with the person, they can suggest the person get assessed. That is by far, if I [inaudible].

Imi Lo: Do you know how hard it is to get assessed for that? There’s so few psychologists who does that. And it’s so costly, especially for adults.

Martha: Well, this goes to two different points. Number one, for the answer for people who suspect that their parent has ASD and they have suffered psychologically because of it, the best course of action they can get is therapy. The best.

I have been able to discover and repair, especially in my relationship with my kids, because the kids of ASD parents will take on the bad habits of those parents.

For example, my dad, he didn’t understand the concept of being able to hang out. It’s like, if you go to a social function, there’s a reason that you go. And then when the reason is done, you leave. There isn’t this idea of you just hang out and see what happens, and you connect with one another. It was a duty.

And another thing is, my relationship with my kids was affected because I was unable to be open with them. And so my kids are now grown, and so I am having to crawl my way back in, and discover what I need to change in myself.

So [inaudible] changing my relationship with them. And that was brutal, brutally difficult. And so-

Imi Lo: I feel quite moved by that. I’m sure it took a lot of effort.

Martha: Yeah.

And so therapy is, as far as I can see, it is the best way to go. But it often is very difficult. I myself, had had some pretty harrowing experiences with therapy before I found somebody who was… I could really talk to.

And in terms of getting assessed, the phenomenon now, which is to adults getting assessed. Which I think is a wonderful trend. And I do know how difficult it is.

Typically, when they assess children in the school system, it’s at least [inaudible] professionals. [inaudible] psychologist, occupational [inaudible]. School psychologist.

And so it’s very difficult. It’s good chance that that parent is going to say, “Ah, there’s nothing wrong with me. It’s all you,” and whatnot. You can’t do anything about that. The only thing you can do is for you.

But I would say, if there are people who suspect that their spouse is ASD, before they had children, get that person assessed. If they have ASD, there’s a really high chance that at least one of their children will have ASD, because it’s a very hereditary situation.

But if that’s the case, then they have a name for it. Everything would’ve been so much different if my mom was able to come to me and say, “Oh dad’s… He is having an Asperger’s moment here. You need to go to him and tell him what he needs to do for you.” If he was able to do that, I would’ve been able to have the words.

Imi Lo: That’s another thing that I was curious about, when surely the relationship between the spouses would be a factor too.

Martha: Yes. I think that it would, just having the information, having a name for it, allows a process for improvement [inaudible]. You could take parenting classes, and the person who is guiding them, could tell them very specific things to do.

ASD people, usually, are very logically oriented. If the person says, “Listen, you have this baby, you need to hold this baby for 30 minutes a day. And you need to look into the child’s eyes, you need to talk to the child.” That is something that ASD people can do because they’ll say, “Okay, I might not understand why it’s necessary. You say it’s important, so I’m going to do that.” And they will do that.

And you can give kids, the person who is the neurotypical spouse, has the ability to give the child names for their feelings and be able to express that. They say, “Okay, if you’re feeling sad, this is what this looks like.” And get a little chart that has the various expressions. So the child understands what they’re feeling, has a word for it, and then can go to the ASD parent and say, “I’m feeling sad, so I need you to do X.” And the ASD person would probably say “okay.”

Imi Lo: Yeah. Sometimes it could be quite good, if it’s really bad, to give them certain set phrases, even if it feels really [inaudible] at the beginning, it’s at least less hurtful than them saying the things that’s completely out of range.

Martha: Well, that’s the interesting thing, is that, that is typically how they help ASD people overcome their social disconnect, is by [inaudible] giving what they call them, the scripts. Literally as a script.

If you go into [inaudible] this is what you could say. I think that it gives them a very good beginning upon which they can improve.

Okay, you’re going to a party, okay, and they set up the situation, “There’s going to be a number of people, this is what it’s going to look like. This is what it’s going to sound like.” They can prepare this person mentally so that when they go in, they can say things like… Even just learning to say, “If somebody offers you something, ‘Would you like some coffee?'” Even learning to say, “Instead of saying ‘no,'” which is what an ASD person would do, “You could say, ‘No, thank you.'” Because the “thank you,” it acknowledges [inaudible].

Imi Lo: It’s a social lubricant.

Martha: Right. So very small things can make a huge difference.

And I know this because my nephew, who is featured prominently in the book, is ASD, as is his brother. So this is my sister’s two kids, out of three, have ASD. And he is a delightful young man. But he went to a special school that handles ASD and communication disorders, specifically.

And so, he learned and he’s just doing great. So-

Imi Lo: And not everyone is so fortunate to have that opportunity and resources. Indeed.

Martha: That’s exactly correct.

Imi Lo: Can I ask you something personal? How are you doing with your parents now, with your father?

Martha: Well, my parents are deceased. My mother died of cancer [inaudible] in 2012.

Imi Lo: Sorry about that.

Martha: No worries. And my dad, he died about three years ago. And it was really when my mom died that it was the crucible that brought me full… And I include a moment with my dad, when I was visiting him, that brought forth the depth of his neurological condition, and how it affected me. And it was a groundbreaking moment.

And then after that it was… So I’m doing much better, but the therapy is absolutely, absolutely what’s sustaining me.

Imi Lo: How can therapy help the person who have had a parent with ASD?

Obviously everyone’s therapy is going to be different, but do you think that you can guess the general themes and ways it can help?

Martha: It’s more… What I found is that, you have to actually go and learn to talk aloud about your feelings because you’re not… I used writing to do that. But when you are writing in a journal, it’s a very isolating thing and you are always right. And that’s not a good thing. You need feedback from somebody else.

And so what I would do is, “I’m going to go once a week and I’m going to write down the things that I’ve been thinking about this week, and I’m going to say them aloud.” That was so important, just to be able to say it, because you’re so closed off. It’s even now, amazing to me exactly how closed off I was.

And when people would want to be friends, it’s like I didn’t know how to be friends. Or when they would offer me compliments, I wouldn’t take them seriously because I knew that they didn’t know the real me. If they knew the real me, they wouldn’t compliment me. They were complimenting a fictitious persona I had created.

And that’s what you’re coming back from. And you’re going through this… Oh, and I also caught the, with Dr. Lamia, your interview with her, and she was talking about the grief. And you go through massive grief that because of this thing that you couldn’t see, your most important relationships are affected, like my kids.

And it was, just like you say, brutal to realize, “Oh my gosh, I have hurt my kids.” And it is the last thing you want to do. And yet you did it because you yourself were damaged. And it’s a hard thing to come to grips with, but I’m much better, I’m on the other side.

Imi Lo: It’s beautiful work that you’re doing. You’ve written a book and you’re helping people with similar experience. So you can’t have alchemized it any better.

Martha: Yes [inaudible] I hope [inaudible]. I hope [inaudible].

Imi Lo: And that’s another thing I’m interested in, which is, how is it likely to affect the relationship between your parents if one of them have ASD?

Martha: Well, I think in our case, as you can imagine is, my parents really loved one another. And I think my mom is one of the few people he bonded with.

But she became his enabler, which I think is normal. He would do really crazy things and she would say, “Oh, it’s okay.” Or not address it at all, or not address it with us at all. We would see how crazy it was. He once beat our family dog because that’s one of the [inaudible].

Imi Lo: It’s actually really not okay.

Martha: Oh, it’s super not okay. The whole situation was that the ASD people sometimes have a very difficult time interpreting an action, and so they will misinterpret it.

So for example, something my little sister did. He felt it was a sign of disrespect. And so he really punished her for what was more or less her just getting overexcited. Was completely, completely inappropriate, completely off base.

And he did the same thing with the dog. The dog had an accident in our basement and he just assumed the dog was disrespecting him, which is ludicrous. And he beat this dog, and we were yelling and crying and we were… But we never talked about it. My mom just glossed over it. And she eventually had the dog put down because he got mean after that, understandably.

But there was never any discussion about, “Hey, this is really weird. This is not acceptable. This is…” She never confronted him about it because she was afraid to, because her livelihood depended on him. And she, overall, loved him.

And so there was a certain resentment that comes. It’s probably no different than a person who looks away from the abuse of one of their parents. And you’re almost more angry with them. It’s like, “Hey, why don’t you step up?”

So that actually took me quite a long time to [inaudible].

Imi Lo: And I think that’s something that people need to learn because it’s very common that we frame one parent is all good, and the other is all bad. And once you realize one of your parents is ASD, it’s very easy for that person to become your object of anger, when actually you’re probably angry with both. You’re angry with your other parent for not protecting you too.

Martha: Were not protecting you. That is exactly correct.

Imi Lo: Mm.

Martha: And, at least nowadays, people have the ability to get this named and deal with it openly. And if they don’t, it’s really on them. There’s no excuse nowadays not to seek help when you need it. It’s a whole different thing to try and get it. That can be very difficult road. But it’s like, if you’re going to be a parent, then you have to be very responsible and understand the mental health of your child is on the line. And those ASD parents are going to need extra help to become good parents, so that the child forms normal.

Imi Lo: Mm.

Thank you for your time today and for sharing so openly, not just clinically, and also personally.

I can hear so much compassion for both side. And that is such a hard thing to do. I hear you not just flipping into black or white and saying, “Oh, these are bad people, they’re bad parents.” You’re very balanced in your perspective, which I think I really appreciate and it’s much needed.

I think people have a hard time acknowledging their anger. I think people very easily flip into black or white. Like, “If I’m angry with my dad, that means I don’t love him. And that means I think he’s a bad person.” When actually we can still love someone very deeply whilst acknowledging their limitations of how we have been deeply hurt.

So I think it’s a very meaningful book. I really want people who can relate to this to get it, and to know that they’re not alone. Is there anything [inaudible].

Yeah.

Is there anything you would want to say to people who might be having this experience or suspect that they’re having this experience?

Martha: I think the more you can read about it, the better, to realize that you’re not alone, which I felt intensely alone. And to the point it was affecting my marriage and my parenting, and so forth.

And so advocate for it. Speak up [inaudible].

Imi Lo: Well, the fact that there were no books available before you, makes it really hard for people to read about it.

Martha: It absolutely does. Speaking up, talking to friends, talking to your parents, whatever form of opening up that you can do will lead to healing.

And that’s part of why I wrote the book too, is that… Well, not everyone is suffering from the exact same thing as me, with the ASD parent. Everybody has these little gaps in their psyche that are making them very, very unhappy, very unhappy. And you can pretend that they’re not there and just keep getting stabbed by these little things. Or you can be proactive and say, “This always makes me really unhappy. Why does it make me really unhappy?” And hunt down the source of the unhappiness. Because that’s the only way to live a more blissful life, as far as I can see.

Imi Lo: I think that’s a general heuristic for everyone, whether or not you have a parent with ASD.

But thank you so much. Thank you so much for your time today. And-

Martha: Thank you, Imi. It was really, really lovely.

Imi Lo: It’s rare that I get someone to talk about a topic that no one else talks about. And so, what an honor and pleasure.

Martha: Well, I’m really happy that you’re open to it. And that’s been my whole goal. People think, “Oh, you’re just marketing a book. You’re just saying things,” but it’s like, this is [inaudible].

Imi Lo: Well you are, because you have to.

Martha: To opening it up. Well, it is, but it’s way more important to me to do the outreach to people and reach out to them, and find the audience of these people.

One of the articles I read, this woman wrote this article, and she got a 154 responses from everybody, from people. And these are all these hidden people.

And they’re, it’s like, we need to speak up and get these people not hidden. So yeah. All right. 

Imi Lo: Please be well, love yourself. And sending lots of good wishes to your family. I think your daughter is very lucky.

Martha: Yeah. Well, thank you.