As co-author of the paper, Mandy sets the scene by detailing what they looked at in this study and gives us a summary.
Mandy provides clarification, and a definition, as to what language regression looks like, before turning to the methodology used for the research.
Mandy then shares the key findings from the paper and elaborates on her findings that children with language regression walked earlier and spoke their first word nearly a year sooner than the children without regression, and that language regression may have decreased impact over time, and that regressive patterns are not associated with worse outcomes.
Mandy further discusses what the implications are of these findings for families, and those assessing children and young people for autism, plus emphasises the importance of not ignoring language regressions.
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Mandy Steiman, PhD, is a clinical psychologist specializing in the assessment of autism and associated diagnoses. For over 15 years, she has served as a clinical site leader for multi-site and longitudinal research studies. At the ACAR Clinic, Dr. Steiman contributes to the development and implementation of integrated clinical-research protocols.
Dr. Steiman trains students and professionals in diagnostic assessment for research and clinical purposes. She is a certified trainer for diagnostic tools, including the Autism Diagnostic Observation Schedule – Second Edition (ADOS-2) and the Autism Diagnostic Interview – Revised (ADI-R). Her goal is to train professionals to provide high quality, evidence-based care while employing an empathic and collaborative approach with patients and their families. (Bio and Image from Azrieli Centre for Autism Research (ACAR))
[00:32] Jo Carlowe: Hello, welcome to the In Conversation podcast series for the Association for Child and Adolescent Mental Health or ACAMH. I’m Jo Carlowe, a freelance journalist with a specialism in psychology. And I have with me Dr. Mandy Steiman, clinical psychologist at McGill University Health center in Montreal and co-author of the paper, ‘Predictors of language regression and its association with subsequent communication development in children with autism’, recently published in the Journal of Child Psychology and Psychiatry.
The paper will be the focus of today’s podcast. The JCPP is one of the three journals produced by the Association for Child and Adolescent Mental Health. ACAMH also produces JCPP Advances and the CAMH. If you’re a fan of our In Conversation series, please subscribe on your preferred streaming platform. Let us know how we did with the rating or review and do share with friends and colleagues.
Mandy, welcome, thank you for joining me. Can you start with a brief introduction about yourself?
Dr. Mandy Steiman: Sure, and thanks so much for having me here today. I am a clinical psychologist at the Azrieli Centre for Autism Research or ACAR at The Neuro, which is a part of the McGill University Health center. I am often involved in training people in diagnosis of neurodevelopmental conditions, including autism.
[01:50] Jo Carlowe: Thank you. And Mandy, let’s turn to the paper, ‘Predictors of language regression and its association with subsequent communication development in children with autism’ which was recently published in the JCPP. What did you look at in this study? Can you give us a summary?
Dr. Mandy Steiman: This study was part of the larger pathways in ASD longitudinal research study, which is a study in Canada and has various sites. It’s a multi-site study. And what we looked at was how groups of children who were diagnosed with autism in early childhood differed depending on whether or not they had experienced a language regression early in their development versus whether they didn’t experience a language development. We were interested in seeing, specifically, their communication abilities over time. And in terms of the main findings, we found that there were some early differences between children who had a language regression versus those who didn’t. Those who had a language regression walked earlier and they developed first words earlier than children who didn’t have a language regression.
But there wasn’t a difference in the age at which they first used phrases. What we also found was that over time, those who had a regression in language skills had some delays in communication. But by age 10 years of age, both groups had a large range of outcomes, quite variable outcomes, whether or they had this developmental regression, and that it didn’t necessarily mean that they were going to have a worse outcome over time, depending on whether they have the regression or not.
[03:39] Jo Carlowe: I want to come back to the details of the findings. But before we do that, just to go back to basics, really, what does language regression look like? How do you define it?
Dr. Mandy Steiman: Yeah, that’s a great question. So language regression is something that’s very common in autism. And it’s somewhat specific to autism too, meaning it doesn’t happen in the same way with other conditions. And it doesn’t seem to happen for kids with other developmental concerns like language delays, for example. So depending on the way that you measure language regression or developmental regression in general, actually, it happens in about 20% to 40% of cases with autism, with higher numbers for prospective studies than retrospective studies.
So the way we define it is that when a child loses a skill that they’ve already established, that would be a developmental regression. So for example, they might be saying a whole bunch of words and then stop saying them, that’s a language regression. But it could also happen for other losses of skills too, like losing social skills like eye contact or other communication skills, like gesture, pointing, the ability to play social games like patty cake.
[04:58] Jo Carlowe: Thank you. Let’s return to the paper. What methodology did you use for the research?
Dr. Mandy Steiman: Well, what we did was we looked at children who experienced significant language regression versus not. And they were looked at different time points when they were on average about 3-years-old, 6-years-old, and 10-years-old. And we also measured other factors like the sex assigned at birth, income, caregivers, age, and education, history of seizures, fine motor skills, and cognitive skills. And to measure communication skills over time, we use the Vineland caregiver interview, which has both expressive and receptive communication scores.
[05:44] Jo Carlowe: Thank you. I know you touched on the findings before, but can you share the key findings from the paper?
Dr. Mandy Steiman: Well, the most important finding, I think, is that at 10 years of age, which was the last time point used in the study, there wasn’t really much of a difference at all between the two groups. So the regression group did have a few months delay in expressive and receptive communication skills, as compared to the no regression group. But that isn’t very clinically significant or likely to impact their functioning very much at all. And this is very common for kids at age 10 years. If you follow them from the point of diagnosis, there was a huge variability in outcomes, so very heterogeneous groups. And you couldn’t really tell the difference between the two groups in terms of their outcome at 10 years based on the language regression variable. Another thing that we found was that cognitive and motor skills were very much tied to communication levels for everybody, regardless of group, which is something that also is what we see clinically. These constructs are often related.
[06:53] Jo Carlowe: I was curious to read in the paper that children with language regression walked earlier and spoke their first word nearly a year sooner than the children without regression. What do you make of that? Can you elaborate on that finding?
Dr. Mandy Steiman: Sure, I was surprised too with these findings at first, looking at the age of walking, and the age of using first words. But if you look closely, the median age for the no regression group was 13 months and the age for the regression group was 12 months for age of first walking. So this is a statistical difference, of course, but it’s not really a clinically significant difference. And when we do studies like this that have clinical implications, it’s really interesting to see what is statistically different.
But also then, you have to take the next step to ask yourself the question, what is clinically significant? Is this important in terms of describing people or groups clinically? And for walking, these ages are within norms for typical age of first walking. So I wouldn’t think that, that was that important in terms of clinical significance. But it’s a different story for the age of first words. That’s a little more interesting, because the median ages were 24 months for the no regression group, but about 12 and 1/2 months for the regression group. Definitely, the kids in the regression group were saying their first words earlier.
So why would kids with a regression actually talk earlier? So something methodological might be at play here, at least to some extent. So if you remember, to count it as a regression, the kids had to have developed at least five words and then lost them. And this is a high bar for language development for kids diagnosed between age 2 to 5 years. So any kids who weren’t speaking yet or who had fewer than five words, by definition, they couldn’t have been counted in the regression group. And they get moved over to the non-regression group. So they may have brought down the median age of first words in that group. The results might have looked different if we had measured more subtle language regression, things like losing babbling or losing the earliest words like mama or dada. But with a methodology that we used, we didn’t end up looking at more subtle regression like that, because the ADAIR doesn’t use those definitions of regression. And that’s actually a limitation of that tool.
[09:21] Jo Carlowe: Thank you. Mandy, as you mentioned before, your study finds that language regression may have decreased impact over time, and that regressive patterns are not associated with worse outcomes. So very reassuring to parents, I assume. But what are the implications, then, of these findings for families?
Dr. Mandy Steiman: Yeah, absolutely, this is very reassuring to parents going through the diagnostic process. You have access to this information even years after a regression happens, even when kids are doing great. This is often a period of time that was very difficult for a parent, because when a regression happens, they might be thinking in their heads, “Wow, is my child going to continue to just regress more and more, and keep losing things that they’ve already developed?”
That doesn’t happen, but it could be in the backs of parents’ minds. The study is reassuring, I think, because it shows that outcomes for autism don’t really hinge on whether there’s a regression or not. And we could take time to reassure caregivers that, yes, your child did lose some skills and that was a very upsetting thing that happened, but this doesn’t mean much in terms of their long-term outcome.
What we know is that every child’s potential for communication skills is different. There’s a big variability in what we see at later ages, which is what this study also found. And what we notice is that the more measurement points that we have, the more we know about what the outcome for the child will be. So their trajectory over time is determined individually for each different time point that we see the child at. So time does help us answer that question about outcome for families.
[11:08] Jo Carlowe: Nonetheless, in the paper, you and your co-authors warn that despite these findings, language regression should not be ignored. Can you say a bit more about this?
Dr. Mandy Steiman: Yeah, language regression is something that definitely shouldn’t be ignored. Any developmental regression shouldn’t be ignored, because it’s a sign that something is going on that needs assessment, and that might need treatment. It’s also quite a specific sign for autism, but could be a sign as well of another condition, for example, Rett syndrome or a neurological problem. So this is a red flag that family needs to consult with a professional to get further evaluation.
[11:52] Jo Carlowe: Yeah, it’s very important to mention that. Mandy, you train students and professionals in diagnostic assessment for research and clinical purposes, what implications do your findings have for those assessing children and young people for autism?
Dr. Mandy Steiman: Yes, well, it’s really, really important to do a good developmental history and ask about developmental regression very carefully and with sensitivity. And I would say to ask even more carefully than the ADI asked. So to ask about these more subtle regressions like loss of babbling, gestures, and eye contact, these are things that parents may not even be thinking to tell a clinician surprisingly. But it’d be more subtle than is. Also, it’s important in the diagnostic process once you get to the end of it to reassure parents that this regression doesn’t necessarily mean that more losses are in their child’s future. That would be very rare and losing developmental skills past the age of 2 is quite rare.
[12:59] Jo Carlowe: Mandy, is there anything else in the paper that you would like to highlight?
Dr. Mandy Steiman: What I would like to highlight, actually, is the dedication of the families that participate in this research. It takes a lot of work and they are with us every few years, coming back for more and more assessments. And we have many sites involved as well. And the contribution of the participants and their caregivers has been so important to give this information that feeds back into science and feeds back into the clinical work of professionals. So that’s something that I would like to highlight, just how important their commitment has been.
[13:39] Jo Carlowe: Are you planning some follow up research that you can share with us?
Dr. Mandy Steiman: Yeah, well, we’re hoping to continue to follow this group. Now, they are between the ages of 17 and 19-years-old, so they’ve really grown up. I mean, I was first involved in this study in 2005 and it’s been going on for 15 years. And I actually diagnosed many of these kids early on. And it’s just a joy to see how they turn out. And now, we have the chance to talk to them and get their perspectives on their lives and what’s important to them, which we’ve already started to do. So that’s something that we hope to continue to do is follow this group and get information on the early adulthood period, which is an understudied area in autism.
[14:30] Jo Carlowe: Fantastic. Is there anything else in the pipeline for you that you’d like to mention?
Dr. Mandy Steiman: Well, if people want to learn more about what we do at ACAR, which is our integrated research clinic, they could definitely check us out online or on social media. We have a training program that aims to support autism professionals. And we’re involved in many research projects and initiatives. So to find us, they can look at our website, which is at.theneuro.ca/acar. So that’s A-T dot T-H-E-N-E-U-R-O dot ca/acar. And on social media, we’re @neuroacar
[15:17] Jo Carlowe: Great. And finally, Mandy, what is your take-home message for those listening to our conversation.
Dr. Mandy Steiman: Well, the take-home message is that we could learn so much from these longitudinal studies and these multi sites studies that bring together a lot of families and a lot of researchers. And by having these larger cohorts and groups, we could learn more about what’s important for families both in terms of the diagnostic process and outcomes that they will experience down the line.
[15:50] Jo Carlowe: Brilliant. Mandy, thank you ever so much. For more details on Mandy Steiman, please visit the ACAMH website, www.acamh.org and Twitter @acamh. ACAMH is spelt A-C-A-M-H. And don’t forget to follow us on your preferred streaming platform. Let us know if you enjoy the podcast with a rating or review and do share with friends and colleagues.