When it comes to autism treatment, acceptance is not a strategy. Neither is guilt. A sense of community, however, can be a major asset for families with autism. In the last installment of this series with Lisa Ackerman, founder of TACA (Talk About Curing Autism), Dr. Daniel Amen and Tana Amen talk with Lisa about what may be the biggest resource of all for those treating autism: other people. TACA provides an abundance of helpful resources for these families, such as putting them in touch with a local chapter for help in facing their special challenges.
Tana Amen: So we are back with our friend Lisa Ackerman from TACA. We're talking about Autism today.
Lisa you are amazing. You really are a warrior. We talk about warriors a lot and turning pain into purpose, and we have your story in our new book, The Brain Warrior's Way. I just am thoroughly enjoying talking to you on this topic and what you went through. But you said something behind the scenes that I thought was really important. So you talked about acceptance, and how sometimes it bothers you when people talk about acceptance because that's so different for so many people and people shouldn't feel bad if they come to it at different times.
Lisa Ackerman: Yeah, and really, it's not the word acceptance. I love and accept Jeff today. I love and accept all people with autism today. I love and accept him at his worse, but I know that when he was at his worse, sleeping two hours a night, [inaudible 00:01:15], having severe constipation and diarrhea, projectile vomiting, dilating pupils, mobile rashes. You know ... Acceptance is not a strategy. It's not a strategy when you see someone that is sick and you need to help them because your job as a parent is to get them to the best possible place. So when your job and God takes you home, you have someone who can function on this planet. Not one of us will have a child and go, "Yeah, I left someone behind that's gonna need love and care from someone who doesn't love and care for them!"
Tana Amen: Right.
Lisa Ackerman: So, I love and accept humans. I love every kid, every adult with autism. The issue that I see with acceptance is when someone needs help, acceptance can't be your only strategy. You can pray that acceptance becomes more-
Tana Amen: That it happens eventually.
Lisa Ackerman: It happens when people are more tolerant to people with disabilities. I know people who are barely tolerant, like we talked about, with politics-
Tana Amen: And religion. Right?
Lisa Ackerman: Yeah. To me, what I think is the most important thing and the most important job as a parent is to not be driven by anger, and not be driven by just hanging low, and accepting what is.
You've gotta find kind of a middle ground, and the middle ground that will drive things forward, hopefully teach other people along the way acceptance and awareness. But really your job as a parent is to get your kid to the best possible place so they can achieve their world's dreams.
Tana Amen: Actually I love that. I always say my job as a parent is not to be popular. It's not to be accepted. It's none of those things. It's not even to have my kid like me. Right? My job is to turn out this responsible human being who is a good person, who knows how to take care of themselves. If they like you, that's a really big bonus.
But what I love about what you said is that, in the case of autism or, I hate the word disabilities, but let's just say challenges. Okay? I know because it's affected our own lives, with our granddaughter. People feel so much guilt and shame if they don't come to that ... they think that there's this ... it's like a box you check off or it's this thing you're supposed to do as if you have to come to acceptance at a certain pace, and it's not like that. And so they feel guilt, and they feel shame, and it makes it harder to do your job as a parent.
Lisa Ackerman: No joke. If your kid's having a four hour tantrum in Target, it doesn't make you look like a rockstar as a parent. I totally get that, and I've been there, done that, four hour tantrums in Target. You know? That talk about, don't yell at me, a bottle of wine later on. Don't yell at me!
Daniel Amen: [crosstalk 00:04:08 - 00:04:10]
Lisa Ackerman: This was while back. [inaudible 00:04:13]. No one looks at that as like, "Yeah!" You know?
Tana Amen: Right.
Lisa Ackerman: This is autism awareness loudly. I think just to really bring it to center, and I was raised Catholic so I know I about guilt-
Daniel Amen: Me too.
Lisa Ackerman: Holy guacamole. I wore guilt.
Daniel Amen: I passed Guilt 101. Advanced Guilt.
Lisa Ackerman: I mean, it's ridiculous. I always tell people, "Did you do something wrong?" And they're like, "No, no. I love my kid." And I'm like, "Well then get over the guilt. You did nothing wrong."
It's just such a worthless emotion unless there's something you did wrong to be guilty thereof. So, honestly, it's an emotion. Unless you killed somebody, you shouldn't have that emotion. You should not have that-
Daniel Amen: [crosstalk 00:05:06] cause that's a Catholic word.
Lisa Ackerman: I know.
Daniel Amen: [crosstalk 00:05:08] it's not a helpful emotion. And...
Lisa Ackerman: Even if you think you did something wrong-
Tana Amen: I just love what you said because-
Daniel Amen: And all of us, quite frankly, have done things that are wrong.
Lisa Ackerman: Oh God, I've done things wrong before I got here.
Daniel Amen: From what we ate, to what we thought. And most people who do wrong things don't have children who have autism. And the self-incrimination is often horrible and it's important to have someone you trust to help you work through it-
Tana Amen: Which is what I love about your work.
Daniel Amen: So know … I always love John 8:32, third verse in the New Testament, “know the truth and the truth will set you free.” And the truth is, we’re still not sure what causes Autism. I mean that’s the truth, so you can say I did this, that, and the other thing, and so did millions of other people do the same, this, that, and the other thing, and they didn’t have a child with autism.
Lisa Ackerman: Well it’s almost like a Richter scale. Maybe that was a 1.0 on the Richter scale, not the 7.0 you’re thinking it is, but to kind of [inaudible 00:06:20] you said, there was one mom who came to me and said, “I put my kid in the wrong school and he was there for three years.” And she was devastated like she made the biggest mistake of her life, crying, “It was the wrong place man. Why didn’t I make a difference? Why didn’t I change it right away?”-
Tana Amen: I saw that personally happen with a kid at my daughter’s school.
Lisa Ackerman: Yeah. So you can insert anything into that and feel horrible-
Daniel Amen: Well if you’re ready to incriminate yourself, you’ll find all the things that you did to fit the negative mindset that’s inside. But one of the things I wanna make sure we do before we finish this podcast is I wanna talk about TACA-
Tana Amen: Yeah, and what you want us to know-
Daniel Amen: I want you to talk about why you started it, a little bit about its evolution, and how it can help people now-
Tana Amen: And I wanna know what you want us to leave with, with how TACA can help families.
Lisa Ackerman: Ok with TACA, the one thing that’s a common theme for a lot of families that we serve over the last 17 years is that they lose their sense of community when you have a kid with autism it’s just easier to stay home. It’s easier not to go to church cause your kid can't be in the children’s group at all. It’s easier not to go to the store with your kid. It’s easier to not do a 100 things just to stay home. What I’ve found is loosing that sense of community is just one of the worse things that can happen to a family. You need community to feel good, to feel connected and-
Daniel Amen: To be human-
Lisa Ackerman: Yeah, that’s the way we work. We’re community kind of peeps. That’s the way we roll. So really what I think autism does is take away that community, and what TACA does is bring it back. It teaches you what information will help drive to effective treatments and therapies. Finding your peeps, if you will, and finding people that are really gonna motivate and drive you-
Tana Amen: So as we would say, a tribe.
Lisa Ackerman: Correct. Absolutely a tribe, and I talk about the tribe all the time so we have that in common.
But I think the most important thing is, the tools that we have is based on over 50,000 families and what works and doesn’t work. And what we’ve been really good at is documenting those things, sharing them, so that you can wove things in or out. Is it in or out? So it’s not that everyone is gonna have the same experience or the same result-
Tana Amen: It’s not about right and wrong. It’s about does this work.
Lisa Ackerman: No. And really what we just wanna see is the best possible outcome for these kids. Some kids may need help for their lives, but we want them comfortable. We want them happy, not riddled with severe medical issues undiagnosed, which is a big problem in our community. We really wanna drive people to effective treatments through the website, webinars, conferences, meetings. This month tomorrow we’ll have over 100 meetings that are coming across the United States for our national Coffee Talk Day.
But really what we wanna do is just give people that sense of community, but the tools that are gonna drive them to the best possible outcome for their kids. So it’s done that way through 12 programs and 700 amazing volunteers that work tirelessly to really pave forward. They got help so they wanna give help back.
Talk about pain and purpose, they have it too. Nothing is better than talking to a family that is absolutely devastated, having the hardest time, giving them some help, and then having them come back and say, “My kid’s better!”
Tana Amen: Oh my gosh.
Lisa Ackerman: So to us, that’s just like, “I got do that again.”
Tana Amen: That’s your paycheck, yeah.
Lisa Ackerman: Let’s do that again. So the programs are driven based on personal need. What did I need that wasn’t there? And then with our team, we built other programs. So it’s very much a team effort to drive families to effective therapies and treatment. That’s really what it boils down to.
And to go back to one thing that you said, what I hope parents leave with today is, guilt, get rid of it. Take that emotion and apply it somewhere else because you did nothing wrong. And for that family that had their kid in the wrong school for three years or whatever 50 reasons you’re thinking that you did something wrong, which you didn’t. Stop it! Is to take that feeling and drive it forward in a purposeful way.
Tana Amen: I love that.
Lisa Ackerman: Because it’s-
Tana Amen: Pain to purpose-
Lisa Ackerman: It really is so important and you’re gonna waste time, and then you are guilty of something.
Tana Amen: I wish I could see your face [inaudible 00:10:54]. It’s hilarious.
Daniel Amen: The Catholic part came out. It came back.
Tana Amen: [crosstalk 00:11:00]
Daniel Amen: Bless me father, for I have sinned.
Tana Amen: Oh, that’s funny.
Lisa Ackerman: I think the most important for families to know is there’s hope and there’s purpose-
Tana Amen: There’s resources.
Lisa Ackerman: There are things to do. Get busy, and don’t be afraid of the future. Be positive. That’s kind of a hard thing about autism and a great thing about autism.
Tana Amen: But you are full of resources for these people.
Lisa Ackerman: Right.
Tana Amen: For these families.
Lisa Ackerman: Everything's free, and if there’s a fee on something, there’s a scholarship-
Tana Amen: So tell us the website, how they can contact you, where they can get these resources for free.
Lisa Ackerman: Correct. It’s tacanow. T-a-c-a-n-o-w.org. What we will do is connect you to your local chapter or to a mentor. Mentoring is one-to-one, connecting you by geography-
Tana Amen: Awesome.
Lisa Ackerman: And by need. Then we will help you on your path towards the best possible outcome, including recovery.
Daniel Amen: That’s amazing. Thank you so much for being with us.
Lisa Ackerman: It’s my pleasure.
Daniel Amen: Lisa Ackerman, Founder, Executive Director of Talk About Curing Autism, t-a-c-a now.org. You’re listening to the Brain Warrior’s Way.
Tana Amen: You’re fantastic. You really are.
