Feelings that Accompany an Autism Diagnosis

Autism: A New Perspective
Autism: A New Perspective
Feelings that Accompany an Autism Diagnosis

Typically, there are three reactions that I hear from parents following a diagnosis of autism:

  • First, there is often an incredible sadness. I think that this one is a common feeling because the common message given is often one of little to no hope after a diagnosis.
  • Second, there is often shock. They maybe had no idea that there were holes or gaps in the development.
  • The third reaction I hear is relief. Relief because as a parent, they knew something was wrong but they didn’t know what it was and now they know, so they can move forward. 

All of these reactions or feelings are normal but what comes next? How do we move forward with processing the diagnosis of one of our children? I would encourage you to slow down. Give yourself a moment. Fast decisions won’t necessarily be your best friends. 

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Kat Lee: Welcome back to ASD: A New Perspective, a podcast show where we help you understand what is going on in the mind of your child, and we always encourage you that growth for your child is possible. I’m Kat Lee and in this week’s podcast, Dr. Sheely talks to parents of newly diagnosed children. Let’s listen in.

Dr. Rachelle Sheely: I think there are two things that I hear from parents when they’re given the diagnosis, maybe three. One is just an incredible sadness. And they will often burst into tears and kind of look at each other and just say, “Oh no, oh no.” And then another one is shock, because they thought what was going to be said to them is, “Look at your baby, this baby talking, so young to be talking, and look what they can do, they can count to 100,” or something like that. And they didn’t have any idea that there were some holes and gaps in the development. And then I think the third one is relief. “You know, I knew it. And everybody kept saying, he’s okay, he’s okay. And I knew he wasn’t okay. I knew there was a problem. I knew that what I was seeing in terms of my other four children, I knew this was different. And I knew that the relation, the relational qualities weren’t there. I love him, and I know he loves me, but it was different. And so I’m just relieved to have someone verify to me, yes, you were right, you were seeing this, and because now I feel like I can move forward and I know how to get help to move forward.” So those are the three main responses that I get.

Kat Lee: Well, they all three make sense. I have to wonder, as opposed to 25 years ago for us when there wasn’t a lot of information versus today where sometimes I feel like there’s… I don’t guess there can be too much information, but maybe even pre-knowing their child has autism, there are shows about autism, there’s series about characters who have autism, and I wonder if that has its own challenges, Dr. Sheely.

Dr. Rachelle Sheely: For me, it has challenges. I feel like a parent who’s just getting this diagnosis wants to make a good choice. And I don’t know so much about other countries, but I know we have this saying in the United States, which is, “No stone left unturned.” And which means I’m going to do everything. Which is the first big mistake that I feel a parent can make. But they’re bombarded with so much information, and they’re also bombarded with parent groups and groups of autistics who are talking about what needs to happen, what shouldn’t have happened. The parents become very confused and in that confusion, not only are they feeling confusion about how to go forward with their child, but how to get the help they need. What do they choose? And so I feel that there is really too much help. It’s one of the reasons, Katherine, that I will give time to any newly diagnosed parent. When somebody says, “Go talk to her, she’ll be helpful,” I talk to them because I want to encourage them, I want to focus them. I want them to be thinking not about what they’ve just heard, but where their child is going to be at 21. And I know a lot of our consultants do that too. We’re not saying, “Come work with me.” We’re saying, “We know what you’re going through. And we’d like to help you know how to think about that.”

Kat Lee: And I just think of all those messages coming from, as you said, social media groups, and the no stone left unturned can mean no group left unjoined, which can be really confusing because so much information… And of course, as we always say, the individuality of the child, it’s so hard for anyone to give feedback to a family, whether it’s in a parent group or what it may be, about their individual child. That child has to be looked at.

Dr. Rachelle Sheely: Yes, it does. And I believe that RDI has positioned itself right now in a good place because we’ve always listened to parents. And I remember when parents used to say to me, “I actually did not see anything different. Give me a period of time,” and of course, that wasn’t what the literature was saying. The literature was saying something different. So we really took those parents at face value, that they knew what they were looking at, and that the children were not exhibiting these signs of autism until they were a little bit older. And sure enough, the most recent research is showing that at about six months of age, there is a divergence, and that the children with autism go on to be status maintaining and the children who go on to not have autism are growth-seeking. And those are two very major things.

Kat Lee: Which is, with that research and that information, it’s likely that diagnosis may be coming earlier, I would think. What do you think? 

Dr. Rachelle Sheely: Yes. But I would also warn about that. The reason I would warn about it, I’ve seen probably hundreds of children now, and I have this sense, I think, that I can spot a child who has autism, but a friend’s grandson who was arching his back, turning away, not looking at us, Steve and I would look at him and we would say, “Are you worried?” and I’d say, “Yeah, I am worried.” Katherine, at 18 months of age, we went to a block party and he was… All of those signs were gone, they were completely gone. We were seeing joint attention, we were seeing language, we were seeing a social butterfly at a block party. So I think that we still have to be really careful with that diagnosis. And even though we might suspect something like that early on, well, we can start doing RDI because RDI is just what you do with any child, so you can always do it, but to not make that diagnosis too early.

Kat Lee: I think that’s such wise, wise advice. And again, with all the messages and autism being so media prominent, I think that’s just such a wise word. And I was thinking, and I talked about the individuality of the child, but I didn’t talk about the individuality of the family, which is also so important for when parents receive that diagnosis to realize their family is an individual family. I think family can get muddled when that diagnosis comes in.

Dr. Rachelle Sheely: Well, we’ve certainly had a few podcasts about grandparents, and we feel like we can talk about grandparents because we are grandparents. But families, families are a unit, they support each other and sometimes, for all the right reasons, they actually do the wrong things. I know that in my own family, my mother used to say to my cousin, “He’s just fine. Dad, he’s just fine, don’t listen.” And meanwhile he wasn’t just fine. And so it didn’t help my cousin who was grieving and trying to figure out what to do hearing my mother saying, “Oh, he’s fine, he’s fine.” And so even though my mother loved their little boy and babysat him all the time and he adored her, those words were not so helpful. Then I think the other thing that happens is that parents are individuals too. And while they come together to be with their child or to work with their child, they come from very different backgrounds. And in my experience, when something is a bit askew, people begin to embrace the way they were raised, and typically that would not be the same.

Dr. Rachelle Sheely: And so if you came from a lenient family, let’s be a lenient family, let’s follow this. Or if you came from a strict family, this boy is going to do this. And so you have that sort of thing. Then it’s compounded by siblings. And you know, Katherine, one of the first things that we say to parents is, “We want your family to be a strong family. We don’t want you to be an autism family,” and so that means that you, your husband and wife, are gonna go out together, you’re going to have time for yourselves, you’re going to leave children with a babysitter or the grandparents. And then the siblings as well, we want the siblings to know that they are just as important as the child with autism, and we don’t want them growing up saying, “My brother had autism and he got everything and I got nothing.” So working with that family system becomes especially important because we want the family system to be strong. We don’t want the parents and everybody focused on the child with autism.

Kat Lee: I remember that time so well, like it was yesterday. As I’ve told you before, and one of our first fears was for our daughter, and exactly what you talked about, that she would… I don’t mean get left in the dust, but that it would be way out of balance with what she received from us versus what our son received from us. And we really had to put in a plan. You know, from us knowing each other for so long, I like a plan. And we put in a plan to try to make sure that did not happen, but however people do it, it’s just so important.

Dr. Rachelle Sheely: I think it’s important. And I think that’s one of the questions that I will suggest people ask when they’re looking for someone to work with. How do you view my family? How do you view the two brothers and the sister? What’s your approach for that? And to be honest with you, if the person doesn’t have an answer, keep looking around. Somebody will have that answer for you. I think another good question for parents to ask is, Who is this not indicated for? So we’ll hear things like, “Everybody needs to be on a gluten-free diet,” or, “All of these children have sensory issues, they need to be getting OT. Everybody is dysgraphic and they need handwriting.” But I think if you can say to the professional you’re talking to, “Who shouldn’t be doing this? Who doesn’t need this?” That question is just as important as, “What will you be doing with my child who has autism?’

Kat Lee: I love that you’re speaking to families who may have received a new diagnosis to know what to do, because it’s actually one of the most searched topics online by parents. “I’ve just got a diagnosis. What should I do?” And one of the things I love about you and Dr. Gutstein is you say, “Slow down. Give yourself a moment. Fast decisions won’t necessarily be your best friends.” I think it’s so important what you say, but I think it’s very hard for parents, don’t you? 

Dr. Rachelle Sheely: I think it’s hard. And I’m not saying that I would do it differently. I can imagine what it’s like. You know what it’s like, I can imagine what it’s like. And that need to do something. Because at least if you’re doing something, you’re not feeling so anxious, you’re feeling like you have agency. We talk about agency. So you feel like you have agency, you have the ability to take this on and go with it, and so sometimes you’ll just jump in too quickly.

Kat Lee: I remember, and I know this is pretty raw, as they say, but just like yesterday, that he was two and we had some friends over and my son was in the other room, I think maybe we had a sitter, and I just wasn’t being able to relax. And my friend didn’t know anything about autism and neither did I, frankly, but I remember she was like, “Are you okay?” And I said, “I feel like he’s just dying in the other room.” And I think back on that, that’s a pretty heavy thing to say, that you feel like your child might be dying in the other room. And she said, “He’s not dying.” And I knew she was right, but I think it speaks to the trauma, it speaks to the love, it speaks to being a mom, I think of where our minds can go, and the crisis we can feel, and it speaks for our love as well. But just if people have those… Feel like they’re irrational, it’s because sometimes that pushes you to that place in your mind.

Dr. Rachelle Sheely: I would say that, certainly, it is irrational to think that that’s happening in the other room, but I also think it’s a very natural response to an unnatural event. And so you’re suddenly hit with something that you might not have even heard of or you don’t know much about or you didn’t expect, and you, of course, you’re going to respond that way. And I think if we can kind of normalize that response to it and let parents know they’re not alone in the way they’re feeling, other parents have felt the same way. There’s some comfort in that, “Okay, I’m not crazy, I’m gonna be able to do that. I’m looking at my best friend. She did it. I can do this. And what I feel is okay because that’s what I feel.”

Kat Lee: Well, I love what we bring to the table, and RDI is one of the things I was so attracted to, is that you and Dr. Gutstein first address those feelings of crisis that parents can find themselves in all of a sudden, and as you noted, for some parents, a shock because that’s just not what they expected to be said, and that we in RDI, we start right up front facing that and asking those important questions.

Kat Lee: Thanks for joining us for this special edition of 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. See you next time.


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