How do you help the people closest to you understand what autism is and how it affects your family? Dr. Rachelle Sheely, co-founder of the RDIconnect model for remediating autism, talks about sharing the diagnosis with your family, how to help them understand what autism is and when to walk away to care for your family first.
Kat Lee: Welcome back to ASD: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child and we do encourage you that growth for your child is possible. I’m Kat Lee and in this week’s podcast, Dr. Sheely talks to us about the very difficult conversation of parents diagnosis and explaining autism to our extended families. Let’s listen in.
Kat Lee: I can say for sure for families I’ve talked to over the years, the problem from well-meaning family members not understanding what it means to have your child receive this diagnosis and what living with that diagnosis means, it is universal. I have many parents tell me stories of their family just not getting it, not in an angry way, but just in a “what can I do?” way. What have you seen?
Dr. Sheely: I actually see both Katherine. I’ve seen parents and I’ve seen parents react in ways that are so hurtful where they’ll say, if you would just, you spoiled him, the reason he doesn’t, and so I’ve seen parents, really diagnosed parents, be crushed because they are also wondering, “Did I really do something? Is it really my fault?” And now they’re dealing with the people who are dearest to them who are trying to talk them out of it or trying to talk it down and say, “Well, this is what you need to do, because when you were little this is what I did.” So I’ve seen that. I’ve also seen parents who are… Maybe the polar opposite, where then they begin to think, “Oh, Johnny’s got… Johnny’s dealing with autism so maybe what we should do is do everything for him.” So, you see the deniers and you see the over-compensators, and both of these are really very difficult for parents because parents are trying to get into a guiding relationship with the child and, not because they want to, but sometimes the grandparents undermine that.
Kat Lee: As you talk, I talk about myself that when we received the diagnosis we had a lot of people telling us it wasn’t true, and just it’s hard to explain how you receive a diagnosis and you’re not just having blind faith in a doctor. You know you’ve got to investigate, but for me there’s just not a lot of things that you get in the diagnosis that people start saying, “No, no. That’s not true.” It’s extremely confusing for parents, at least I know it was for us.
Dr. Sheely: And I think sometimes for all the right reasons people do and say the wrong things, and I was thinking about my own mother who had access to a child on the spectrum and she would do all these things with this child and then she would say to the parent, “There’s nothing wrong with him, he’s fine.” And he wasn’t fine and he did have autism and I could clearly see the autism, but she thought that if she said that it would make them happy and make them feel better, meanwhile 24/7, they were dealing not only with the diagnosis but the ramifications of that diagnosis. And I feel like if we can help grandparents assume that grand-parenting role, to think, how are you a grandparent to all these other grandchildren you have? Be that grandparent.
Kat Lee: It’s interesting because we talk a lot about denial, denial in parents which of course absolutely happens understandably, but I don’t think we talk that much about denial and family members, denying that your life has changed. I’ve talked to families who said, “My family is still expecting the same things of me and I can’t give it. What do I do?” What do you say?
Dr. Sheely: In RDI, Katherine, we spend a lot of time educating parents about the diagnosis and I feel that that educational tool we have for parents is a really important tool for the grandparents, and the aunts and uncles, and other people who have not been exposed to it or think autism is something that it isn’t so actually having grandparents watch those videos can be very helpful. First of all, I think the way that Steve describes them, you’re not afraid when you listen to it so you don’t have to say, “No, no, no, not my grandchild, not my child.” He describes it and he also describes the hope that we have for the children we’re working with. And I believe that if we can balance for parents the seriousness of the diagnosis… And the grandparents, the seriousness of the diagnosis, and balance that with hope. And it’s not just pie in the sky hope. We have hope and we have the evidence for that hope. I believe that everybody is going to get on board and that at that point, the grandparents can become a wonderful support for the parents, but they have to understand what it really means. So we don’t deny the seriousness but we also are hopeful.
Kat Lee: Sometimes parents will tell me that they discovered that certain family members don’t care, and I hate bringing that up, that’s a pretty painful discovery, in other words, they know I’ve educated them and they don’t care. What do we say to those parents? That’s a challenging discovery to find out about a family member.
Dr. Sheely: What do you… I don’t care? You mean, I don’t care that you have this thing you’re dealing with or I don’t care… What is that?
Kat Lee: Does it make any difference to me, I still have the same expectations of you, I still… I don’t… It doesn’t seem like that big of a deal to me. I always say, “But you know it is, and we know the work we’re gonna do, and we just have to not listen to those voices.” You can only do what you can do, but it’s still very challenging.
07:13 Dr. Sheely: Yeah, and it’s hurtful. It’s very hurtful. I actually think sometimes, Katherine, parents who receive the diagnosis and are dealing with parents who might come across that way are in a situation that they have to remove themselves from. I hate to say this, but I don’t believe that there’s always a resolution that works right now in the present. And sometimes you simply have to remove yourself and say, “I’ve got this thing that I’m dealing with and I’m gonna deal with it. I’m the parent, and I’ll see you when I can see you.” But all of those expectations are part of, almost a separation, which is so sad because this is the time when parents need the grandparents. They need someone to say, “I’m still your guide, I’m gonna help you through this. I’m here for you.” But as you said, it doesn’t always happen. And when it doesn’t happen, you have to take care of your own family.
Kat Lee: What I love about our visits is that families can feel so alone, we know that through the diagnosis, but they can also feel, as parents, alone in this topic as well, with their extended family, whether it’s their brothers and sisters or aunt, parents. And I like to think, you’re not alone. If you’ve had trouble with your family understanding, this is not uncommon. A relief comes over families when they realise that, Dr. Sheely.
Dr. Sheely: I think it is. I think that is a relief, it’s not just my family. I think there’s another thing, too and I try to help parents sort this out. By the way, I think it’s rare that this happens with grandparents, I think it’s very rare. But when it does happen, I really spend time with the parents saying, “I know you have a support group, let’s figure out who it is.” And we begin to think about who in their community might be there to support them, giving them an hour to go out to lunch, to get their nails done or just come over and spend time while the kids are in school. There are ways that you can begin to build a support group that is that support for you, when the one you expected would always be there for you is not available.
Kat Lee: Well, we’ll move away from that end because… [laughter]
Dr. Sheely: Yeah, that’s a good idea. Yeah, let’s do that.
Kat Lee: It’s lovely, overcompensating. So, it’s a lovely well-meaning, overcompensating that needs some redirection, maybe, a little bit of help, understanding that that’s also problematic at times. What would you tell parents who in many ways are fortunate to have those loving parents. What do they say?
Dr. Sheely: Okay. So, I’m watching a video and I’m watching an eight-year-old boy and his grandmother is feeding him with a spoon. Okay, so in case somebody doesn’t know what overcompensation is, I just wanted to give an example of overcompensation. I think for the grandparents who might overcompensate, they are really the people who, for all the right reasons, are doing some things that are undermining the parents strive to help their child become independent. And those grandparents are the great ones to work with, because once you get them on board, once they understand the objectives that are being worked on, they are going to be almost like an extender. You’re gonna know what to do when they’re with the child. They’re not going to feel like, “Oh, what do I do now? Let me put more food in your mouth with this spoon.” Child’s probably cutting with a knife already. So, I feel that those are the parents that we definitely want to get on board. And we want to acknowledge, we wanna acknowledge their heart for the child. We want to acknowledge how important they are, not only to the child, but with parents. And when you get those grandparents on board and they know what the parents know, then you really see children have a good response to the treatment.
Kat Lee: What do you say to parents or have you experienced where they’re a little hesitant to give their own parents direction, where we both have children, in this case, as a child of a parent, you may need to give direction, you may need to be their guide? That can be challenging, I think.
Dr. Sheely: I think there’s an educational piece. And the educational piece comes right out of our learning system, where we talk about the guiding relationship, the importance of it, what it looks like, how you get that in place. And so once parents begin to understand that themselves, then my suggestion is get the grandparents on and I will… Let me talk to them. Let me spend a little time with the grandparents. And typically, that will help. In some ways, I feel that grandparents are like a couple raising a child on the spectrum. And sometimes you’ll see one has more knowledge than the other, and the one with more knowledge will be saying, “No, no, sweetie, not like that. Sweetie, look over at him and say… ” It’s like, “Oh, don’t do that.” We all want our own relationships and so allowing the grandparents to develop a relationship without getting every single thing right or being therapeutic is important.
Dr. Sheely: And I’m not sure that, in the moment, if a grandparent is doing something, they should be corrected. But in another time, you might say something like, “We’re so excited, baby Johnny,” whatever you call them, “baby Seth, is ready for the next step.” And so rather than saying, “I don’t want you to do this.” He’s ready to move on, he’s ready for the next step. And to kind of couch in those softened start-ups, this is what I would like for you to think about doing with him. And we talk about declarative language so they could even say, “There’s a kind of language that we wanna begin using with him, and is it okay if I… Would you be willing to help me and kinda practice that with you?” And so at a time when the child is not around, I think that’s when you could have the conversation. Also, working with a consultant, the consultant can have the conversation with the grandparents as well. And every now and then, you may want to bring the grandparents into a session.
Kat Lee: Well, as we close, I can say that we both love grandparents because we are grandparents.
Dr. Sheely: Yeah, we are grandparents. And I would personally never overcompensate. Would you?
Kat Lee: No, never.
Dr. Sheely: Okay.
Kat Lee: Thank you.
Kat Lee: Thanks for joining us for ASD: A New Perspective, a podcast show where we help you understand the mind of your child. And we always encourage you that growth for your child is possible. I’m Kat Lee. See you next time.
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