Q&A #2: How do we help children who are ‘falling behind’ without using milestones?

Hi, I'm Emma, and I'm listening from the UK. We all want our children to lead fulfilled lives. But we're surrounded by conflicting information and clickbait headlines that leave us wondering what to do as parents. The Your Parenting Mojo podcast distills scientific research on parenting and child development into tools parents can actually use everyday in their real lives with their real children. If you'd like to be notified when new episodes are released, and get a free infographic on the 13 Reasons Your Child Isn't Listening to You and what to do about each one, just head on over to YourParentingMojo.com/subscribe. And pretty soon, you're going to get tired of hearing my voice read this intro. So come and record one yourself at YourParentingMojo.com/recordtheintro.

Hello, and welcome to the Your Parenting Mojo Podcast. Today we are going to dive into the second of our Q&A episodes where we're taking questions from listeners and turning those into short form episodes to get quickly and concisely to an answer for you. We're actually going to hear from two listeners today who have related questions. And just before we start, I'd like to remind you if you'd like to submit your own question, you can do that by sending a video to us. You can put it in Dropbox or drive or some other folder where we can access it. Less than two minutes, please. Send us a link at support@yourparentingmojo.com. If you prefer to record audio only, there's actually a button to do that at YourParentingMojo.com. So to get into our question today, this actually came out of the Why We Shouldn't Read the Your X-year old Child Books Anymore episode that I released last year. And I received one question from a listener via a video and another one in our free Facebook group in written format. I'd also like to thank listener Erica, who has really helped me to refine my thinking on this topic. So thank you very much, Erica. I appreciate the time and energy that you put into our conversation. So all right, so let's get started with our question, which is how do we support neurodivergent? Children? How do we identify that they have an issue that requires support? And how do we go about supporting them if we aren't reading books like The Your X-Year Old child books, and if we are potentially seeing that some forms of therapy can be harmful to children. So let's hear from listener Jessie first.

Hi, Jen. Since my daughter Mae was born, we followed a respectful needs-based parenting style using the strategies we discussed in the podcast. Mae has always been behind with language milestones. At 20 months old, she is saying maybe one to few words a few times a week. After much deliberation, we eventually got her evaluated through early intervention. They're reluctant to do so since we've internalized the value of letting kids develop at their unique pace. But it's been frustrating for us and for Mae when she has big feelings now and can't easily communicate her needs. We now see a speech therapist who has also trained in, right, which is comforting. But I still worry that trying to teach Mae language is not honoring her developmental timeline and might undermine her intrinsic motivation to communicate. We've used the Ryan evidence based strategies, from birth like talking her through care tasks and talking about things she's interested with her etc. How likely is it that trying to teach her language undermines her intrinsic motivation to learn and her connection with my partner and I?

Alright, and so now we have a related question from a preschool teacher who works in special education. And this was posted in our Facebook group. So I'll go ahead and read that for you. And so this teacher writes, “I just listened to your latest episode about the series of books by Louise Bates Eames. It was a great episode and brought up again a concern or rather conundrum that I've been wrestling with in my mind for the last year as a special education preschool teacher learning more about neurodiversity. The more I hear from the Autistic Adult Advocate Community, it seems clear that the normal progression of child development, milestones, and such, are problematic for autistic children as their development looks very difficult from “typical” development. Now listening to your latest episode made me wonder if there's an actual benefit to having these types of measures, which I believe there are, but maybe not necessarily the way they have been developed or how they are used. The question is, where do we go from here? How do we remedy this? Undoubtedly, it's helpful for parents to understand child development and not have unreasonable expectations for children who have an undeveloped prefrontal cortex and lack impulse control, etc. And certainly some children benefit from early intervention and therapy. But how do we know if and when it's appropriate or not? We don't want to erroneously set a family on a path of feeling like they need to change their child due to their neuro type. But without support, some children and family would struggle to establish effective communication and nurture their familiar relationships. Perhaps it’s evident, I don't quite have the topic sorted out yet and have a question formulated. But I want to thank you for your work and let you know it is helping to rethink and reshape institutions within and it's outside of families that may have unwittingly perpetuated harm towards children.”

And so my first response when I received these questions, was a resounding, “Heck no! I am not going to touch these questions.” I'm not going to do episode on these things, because I am not qualified to comment on therapy for children. I'm not an expert. I have not received training in providing any kind of therapy for children. But I have been in autism support groups for about six months and before you think that doesn't qualify you to provide support for a family or a child. Yes, you're absolutely right, it doesn't. But what I have observed in being in those groups is that the vast majority of therapy that is provided to autistic children is actually damaging to children. So the purpose of these groups exist is for parents who have just found out that their child is autistic. And I'm sure there are similar groups for parents of children who have ADHD and other diagnoses as well.

The Autism group is just the one that I'm in. So the newly diagnosed child's parent often shows up and says, “Help my child has been newly diagnosed.” And the therapist is recommending applied behavior analysis therapy, or ABA. Should I do this? Is it going to help my child? And so on. And then also, there's a subset of parents who are further along in their journey, who have been navigating this for a while and who are looking for more in depth support. And the adults, the autistic adults who are in these groups are in a way speaking for the child, right. They're speaking from the perspective of having gone through the kinds of therapies that are now being recommended to these parents. And they are saying that applied behavior analysis specifically, is a therapy that is very damaging for young children, who later obviously turn into adults.

So ABA basically teaches children to cover the methods that they use for sensory inputs for the convenience of adults. So a young child might use what's called a stim, like, maybe they waggle their hands when they're feeling overwhelmed by sensory input. And the purpose of the ABA therapy is to get them to stop doing that. Maybe the child doesn't like to make eye contact when they're speaking to somebody else. Maybe the child doesn't even speak to other people. And the purpose of the therapy is to get them to make eye contact with the other person to speak to another person. So what the therapy is essentially doing is trying to get the child to override the tools that they're using to manage their sensory input, and to act in a “normal” way that is more appropriate in a “normal” environment. And so autistic adults are very, very clear that this type of therapy is very hurtful to children. And I'm trying to find somebody to talk with about this. I haven't had a lot of luck. So far, I've been hoping to find someone from who can speak to this from an autistic perspective. And I've had a hard time finding someone who will agree to do that. But I am working on it.

So well, we'll set that aside for a minute and consider the issues more broadly. And I think that when the child is initially diagnosed, right, these parents show up with such frequency in these groups saying my child was just diagnosed, and the doctor is already suggesting we go into ABA therapy. So there's this huge push to get the child into some sort of therapy, some sort of treatment, because there's a perception that the child is already behind. They've already missed some sort of critical, sensitive window. And it's our job to get them to catch up to the “normal” children as fast as possible. And there's no space here in this rush, right? The rush is get the child in therapy as fast as possible. There's no sort of spaciousness to understand, “How does this fit with my values, my family's values? How does this fit with the experience that my child is having? Are there aspects of my child's experience that we want to help them navigate more effectively? Are there ones that are actually fine, now we understand what it is?” We're looking at the medical model here.

The medical model means the experts know best. And it's our job as dutiful patients to pay attention to those experts and to do what they say. There's also a huge sense of urgency, which is almost inherent in the medical model, like this thing has to be fixed now. This is a problem that is not going to go away. And it's only going to get worse, the longer you leave it. And so you must take these steps as fast as possible. And then of course, what we're trying to do with the therapy is to take an ableist perspective of these developmental milestones. We're saying that the milestone is what a normal, able-bodied child should be able to do. And so we want to get your child as close as possible to that norm, right. That's the whole premise of the your X-year old child books as possible. Because only a fully able-bodied child, a fully able-bodied person has value in our society, is valued as a complete human being.

And of course, this is linked to capitalism, right? A fully able person is able to contribute to the capitalist machine, is not detracting money from that system by relying on social support, social services. And then another way it’s linked to capitalism is that we're supposed to buy things to fix the child, right? We're supposed to buy sensory toys or the therapy itself, right? The therapy itself is a huge business. And there are companies that are making a massive amount of money on providing therapies to children that are actively damaging for the child. So lots of links to capitalism in what we’re seeing here.

I want to be clear that I'm saying is I'm not saying we should never offer therapy to children. And so I see three questions that I think are important that I would encourage you to consider as you are thinking about whether therapy is appropriate for your child. The first of these questions is, have we done everything we can think of to support the child that doesn't involve going to therapy? And so what we are looking at here is, have we addressed every possible consideration everything that they seem to be having struggles with? For example, if we already know that they're struggling with sensory input, maybe it's clothing, right? Clothing tags are really hard for them. Have we already cut out all their clothing tags? Have we looked for clothes that don't have tags that have specially soft fabric that they really appreciate, and are not irritating to their skin? Are we already doing those for every type of incidents where we understand that they have sensitivities? And is that having an impact to reduce the amount of time that our child is spending dysregulated? Because if we are we don't necessarily in therapy for that, right? We're already working on these things. And part of this work involves being in these communities of people who are adults who have the same challenges that your child does, and who can reflect things back to you that you might never have considered. So what you'll probably find is that the things that to you may seem incomprehensible, and are completely meaningless behavior, and it's like, why won't the child just stop doing this, the Autistic adult, the ADHD adult, whoever is in this community to support you, is helping you to see that these behaviors that seem just bewildering to you, in the child's world have meaning, in the child's world reflect intelligence, and the child's desire to do well. And they can also offer ways for you to support that child that you without your experience in, in having this neurological difference might never have considered. So I really think we should look to these communities as a first place of getting support before we consider therapy.

And within that, we also need to consider that neurodivergent people which I'm the term I'm sort of using to mean people who have some sort of neurological difference, although frankly, I find that concept very difficult to get my arms around because I think that we're all neurologically different, that we all fall somewhere on an overall spectrum. It's not like there's a group of normal people over here and a group of neurologically different people over here. To me, that's a false dichotomy. And that actually, we all fall somewhere on some kind of spectrum of neuro divergence, but for the sake of sort of that using terminology that people recognize, neurodivergent people have the same needs that “neurotypical”people need as well, right? They also want to experience empathy. They also want to experience connection, belongingness, autonomy. And so just because they're doing these behaviors that may seem incomprehensible to us, doesn't mean that they don't also have these needs in their lives. So that's the first of the three points to consider.

The second of the three points is, does the therapy aim to help the child and not just the adult?So within that question, what we're asking is, what is the therapy designed to do? Are we seeing neuro divergence as a natural variation in human neurology? Or are we trying to “fix” the child and make them appear more normal, make their behavior less mystifying for us, right, make it so that it's more acceptable in a social environment? So I think that if we are trying to do something that is fixing the child making them appear more normal, then that's that's a real clue, a real indicator that is this therapy is not necessarily aiming to help the child. It's mostly aiming to make our lives easier—to make it seem as though our child is doing better, even though that what therapy is probably doing is just making the child camouflage, to cover up the feelings that are still inside them, that now can't come out in the way that feels most natural for them to come out, because they've been taught that that's not acceptable.

Secondly, within this idea of the therapy helping the child, we have to admit there's a lot of unknowns in therapy, right? When you look at research, peer reviewed research on therapy, there's this massive array in results in terms of, does this therapy help this certain group of people? Does it help only people of one gender, only people within this certain age group? Does it help only people who have not particularly severe symptoms or very severe symptoms? So there is no therapy that is going to help every single child. So it's not like I can point to one therapy and say, “This is the one thing to do and.” We also need to consider whether or not the child actually has an issue that can be addressed through therapy. It's entirely possible that they don't. So if the child isn't speaking, because they have some sort of physical oral motor function challenge, they can't move their mouth to form the words, then taking your child to a therapist who is holding their stuffed toy out here and saying, “You can have it when you say the word for it,” is not going to help, right because the child is not going to be able to say the word either way.

Related to that is the idea that therapists often learn a very specific set of tools in school when they're learning to become a therapist, and that these tools are very often behaviors based. And there are other kinds of tools that they may not learn about until they do their own research, their own learning, after they've already become a therapist. And so some of these might be things like Gestalt language processing, which is that some children learn language in chunks, rather than word by word. And echolalia is a skill, a tool, that these children use to remember large chunks of information and recount it back. And then from there, they break it down into smaller pieces. And so therapists very often have no exposure to these concepts, and they learn about them once they're already therapists on their own time. And once they have these tools, then the therapist sees, “Oh, this child is using this different mechanism of learning language, and I can support them in doing that.” But until they've done that learning, they don't have that additional knowledge. And they're trying to get our child to comply within this one way that they know how to speak language. So my overall point here is that our job is not to train all children to learn the same way, right. We don't need to train our children to learn language by breaking it down into individual words. We can understand what strengths each child is bringing to the process, and work with that, rather than requiring that they change their behavior to fit the therapeutic model.

The third issue within this idea of understanding whether the therapy is benefiting the child or not, is understanding where we want to spend our time and energy, right. A lot of ABA therapy for autism, the therapist will recommend eight hours of therapy a day, five days a week. So this is a massive investment of time and massive investment of energy for something that autistic adults say is damaging. So is that where we want to be spending our time some parents will be really stuck between a rock and a hard place. And it's like, “Am I gonna put my child in ABA therapy or in a school environment that has absolutely no tools, no idea how to cope with my child's special needs?” And that is a is a really difficult place to be. But to the extent that we can step back and say, “Is this something that is actually can be changed? Do we want to change it? Does it benefit the child to change it?” If so, do we want to spending eight hours a day doing that right? Or is it something we want to back off from a little bit? And if there are other options open to us that take less time, less energy, that our child has more autonomy over? Then could we do those instead. So all of those have a place in this decision, as we evaluate the kind of therapy want to do rather than just jumping in and jumping straight for whatever is the first therapy that our primary care practitioner, or even the diagnostician says is the one that that we should be looking at.

So my third question is that we should be considering as we're looking at therapy, as does the child consent to the therapy. And to me, this is really, really, really important. And the way that we can understand that consent varies at different ages. And from the very youngest age, right, we might be looking at things like does the therapist respect the child's space and body? Does the therapist respect the child's communication methods, even if those are not what “normal” children are doing? So if the child is communicating using glances, does the therapist see that, respect that, respond to that? Or does the therapist ignore that and require the child to produce words to be able to count that as communication? So that's sort of a basic level of respect we want to be looking at when we're in a therapy session and looking for the child's consent to participate in this.

The second is, are we looking to only fix a child's weaknesses, right, we're seeing the things our child is not doing well, and we're trying to move the needle on those so they appear more normal? Or are we building on the child's strengths? Are we seeing what they do bring to this the ways that they do learn language, the ways that they are competent, and that the skills that they bring to their lives? Are we building on those and supporting those as well? Does the therapist tell you about the both the strength and the limitations of their approach? Are they upfront about that, and in telling you what realistically their therapy can achieve and what it is not going to be able to achieve? And here, I think you need to be especially aware that not all ABA therapists who are treating autism particularly are actually practicing ABA, right? So insurance companies will only recognize ABA as the only therapy that is evidence based because it changes behavior, because, of course it does this behavior is based. And so that's the only therapy that the insurance companies will reimburse. But there are some therapists who are providing respectful sort of very much child-centered therapy that is not aiming to change the child's behavior, but they're calling it ABA so that they can get reimbursed by insurance, so that you can bring your child to them, and then they can get reimbursed. So it's really important to understand not just what does it say on the website, but what is actually happening in the therapy room when when you and your child's and the therapist are in there together. And that's much more important than what anyone says about what's happening.

As soon as possible we want to be moving towards active consent for the child. Does the child want to attend the therapy? Does the therapy seem to be helping the child to meet their own goals, right? This is not a goal that I as a parent of a child have set, you know, my child needs to be able to do this by a certain date. This is a goal the child has set for themselves. And as an example of that, if I as an autistic person had been taken to ABA when I was in primary school years, if anybody had spotted then what was going on with me, I think ABA could have been pretty damaging for me, and would not have helped me to develop social skills. But by high school, I was really clear that there was something going on. I didn't understand what it was, right. I just knew that I had a hard time socializing. And if somebody had said to me, “Hey, I think there might be a reason why you're having a hard time reading signals from other people. Would you like some help with that?” I would have said, “Heck, yes!”

Bring it on right now and I would have been gone on that, right. And so of course, the parent would have been terrified. There's like a, you know, seven or eight year period in there when I may have been missing something really important. And yes, maybe there is. But maybe I would have been able to take on those skills in high school in a way that my agency I have chosen that, I have decided to, to learn that to practice those skills. Yes, maybe I've burned some bridges already with some of the kids in the school. There are probably going to be others that I haven't burned, and that I am going to be able to practice with. And that could have helped me more than just trying to get me to camouflage my behavior if anyone had actually spotted that I needed those kinds of, that kind of support when I was young.

And then finally, I think we have to acknowledge that children don't have to be verbal to consent, right. We can still read their signals. We can still know that if they're fighting to put your shoes on to get in the car, before we go to a therapy appointment. But they don't fight to put the shoes on at any other time for any other reason, then there's probably something about therapy situation that is a little uncomfortable for them. So can we figure out what is uncomfortable? Is it the particular therapist? Is it the office environment? Is it a certain exercise that they're doing that we can adjust? Or are they just saying, “I don't want to do this. I don't want to be trained to have different responses to the things that are happening in my life. Because actually, I need my underlying needs to be met.” And if that's the case, then I believe we should respect the child's wishes, and not take them to therapy, even though everybody is telling us this child needs therapy, because the child is not consenting. And that consent is of primary importance. So I think if we can answer “yes” to each of these three questions, we can proceed with therapy. If we're answering “no”, then potentially we shouldn't. And so I want to apply each of these questions to Jesse's child, right the situation that Jessie wrote in about or recorded the video about, and then to a theoretical four year old who's struggling.

So let's look at Jesse's child first. So presumably, Jessie has done a lot of reading a lot of talking a lot of not putting the child in uncomfortable situations. And the child is still struggling to communicate. And so one one way that a diagnosis can be helpful is it can help us to identify what are– where is this community of adults who have had similar experiences to this, right? If we don't know if we're dealing with autism, with ADHD, with something else, then it can be hard to find what is the right community of adults to support us. So the diagnosis can be helpful from that perspective. And then we can go to that community and say, “What did the adults there say about their experience? What helped did therapy help was therapy harmful? Did time spent in many hours of therapy reduce the amount of time available for other activities that might have been more helpful?” And I think the key point and what Jessie shared is that her child feels frustrated that she can't communicate, right. So it's not like we're trying to train Jessie's child to do something that is only making the child's only making the parents’ life easier. This is something that Jessie's child is struggling with, and is trying to say, “I want to communicate more,” and is not able to do that. And so because this child wants to communicate, I believe this implies consent, even for an essentially pre-verbal child. And thus, it's appropriate to look for therapies that can help her to communicate, of course, within the respect base parameters that we talked about earlier, to get support for that.

And so now let's look at a theoretical four year old child who's struggling, right? Maybe we've tried a lot of different things to get the child to be more normal, to stop expressing some big feelings, to talk to us when they're having big feelings. And so what we're looking is, have we looked at all of the potential issues that we can address ourselves? Are we looking at the quantity and the quality of sensory input they're getting, and if that's matched to the child's needs? Have we tried changing our approach and our approach needed the parent, not just the child, but the parents’ approach to the situation, that the child is finding challenging, and thus, that we're finding challenging together? And look for ways to meet both of our needs in that situation? If we haven't, let's try that first. And I think we also need to address it, is there family turmoil happening here? This is a really incredibly overlooked aspect of trying to understand if a child needs therapy. And the reason for that is we sort of assume under the medical model in our cultural milieu, that if there's a problem with a child, the problem is owned by the child, and it's the child that needs to be fixed. And what we're trying to do is to see what's going on around that child that's impacting the way that child's showing up. And so if we think all the way back to years ago, we did episodes on The Impact of Divorce on Children, sometimes the divorce itself is not necessarily the thing that is harmful to children, right. Parents may show up in therapy and say, “Well, I only got divorced six months ago, and this behavior has been going on for years now.” And so the divorce is just a culmination of years of problems in the marriage in the family that have led to the divorce. And it's those that the child may be responding to, rather than the divorce itself. So we really need to take a close look at what else is happening in the family that the child may be responding to. Because otherwise, all the therapy in the world to get the child to change their behavior is not going to work if the child is continually going to be in this environment that they are finding very difficult to navigate. If you want to dig more into that I would definitely encourage you to listen to the episode that I recorded called, I’ll be me, can you be you? where I look at some of the family issues that impacted me growing up to help you to think through how some of those might be impacting your child as well.

And so if the child is still struggling, then if therapies like ABA, like cognitive behavioral therapy are designed to change the behavior not addressed the underlying reasons, and I think the only kinds of therapies we should offer to very young children are those that are not designed to specifically change their behavior, but to help them express their feelings verbally or non verbally. And an example of that I would give is grief therapy, right? If somebody has died, and the child is clearly having very, very big feelings about it, we're not going to send them to cognitive behavioral therapy to ABA and say, you know, “Change your behavior.” We accept that they're going to be having these big feelings. And then the therapy is designed to help them to understand and express those. And that would be an example I see of a therapy that is really helping the child rather than one that is designed to change their behavior. So I want to just offer one more thought on the idea of consent, and whether a very young child can offer consent. To me, the younger the child is, the more difficult that is for a child to truly be able to offer consent, because we don't know what their goals are. A child can really only consent to therapy, when they can understand what is involved in that therapy, and when they can decide whether that therapy is going to help them to meet their own goals. So from my perspective, I don't think behaviors based therapies are appropriate for very young children. That doesn't mean they're never appropriate. A child who is regularly overwhelmed by their own sensory input may actually welcome skills developed through a CBT type of environment, to change their thought processes. But they have to be the ones to make that choice, right. And we may be able to say that to a five year old, a six year old, a seven year old. It seems as though you're feeling really overwhelmed by the sensory stuff that's going on for you. I'm wondering if a type of therapy to help you change the way that you think about these types of sensory inputs could help. Are you willing to explore that, and then constantly getting feedback? How is this working for you? Is the therapist respecting you as the therapist respecting your communication methods? Does it seem to be helping? Continually evaluating those things, and then I think those kinds of therapies can be appropriate. But if we're looking at this for a two year old, three year old, four year old, who may not be able to really fully understand what's happening in the therapy and what the therapist is trying to get them to do, and why they're trying to get them to do it, then I don't believe behaviors based therapies are appropriate in that kind of environment.

And so what this will almost inevitably mean is that the child is going to be older when they start therapy than they would under the model where as soon as you get a diagnosis a week later you're in therapy. And yes, it is definitely possible, that may mean that the child develops some skills later than they otherwise would. But what we have not done is lost the trust that we have between the parent and the child in making that transition. And to me, that's a far more important thing than any specific challenge the child has, right. Like, if I think to my own experience, yes, it has been In hard to not have social skills to navigate social situations. Yes, it would have been great to have had those in the high school years and beyond particularly. Would it have been better for me to have been fully accepted by my family even if I never ever got any of those wider social skills? Yes, that would have made a profound, profound difference in my experience. If I had not had that trust and acceptance in my family, but I had some social skills, probably could have helped, but not as much as knowing that I was fully accepted within my own family. And so by starting with that as a ground zero, this is our thing that we're primarily concerned with, and everything else builds on that, in my mind is where I want to be in relationship with young people in my life. So--

And in the meantime, the work to be done is not to fix the child, right, to get the child to do anything different. The work to be done is around the adults and the children who are struggling to adjust their expectations and their ways of interacting with the child. So I hope that that has helped explain some of my thinking on whether therapy is appropriate for young children. And if so, how we should identify them how we should deliver it. I'm sure this episode is going to promote a lot of debate. So if you would like to join us in the free Your Parenting Mojo Facebook group, I invite you to do that. And we can have some conversation about it there. And just a reminder, if you'd like to submit your own question for one of these Q&A episodes, you can do that by sending a short video less than two minutes to support@yourparentingmojo.com Send us a Google Drive link or Dropbox link something like that, or use the button on YourParentingMojo.com to record us an audio sample. Thanks so much, and I'll see you soon.

Hi, I'm Emma, and I'm listening from the UK. We know you have a lot of choices about where you get information about parenting, and we're honored that you've chosen us as we move toward a world in which everyone's lives and contributions are valued. If you'd like to help keep the show ad free, please do consider making a donation on the episode page that Jen just mentioned. Thanks again for listening to this episode of The Your Parenting Mojo podcast.