Autism in the Adult Talking About Autism: Navigating Emotional Atmospheres
Join Dr. Regan for the second episode of the series "Talking About Autism." This episode focuses on how the thoughtful navigation of emotions during conversations about autism can create space and freedom for more discussions.
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Dr. Regan's Resources
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Book: Understanding Autistic Behaviors
Read the transcript:
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Hello,
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This is Dr Theresa Regan. Thank you for joining me for this episode of Autism in the Adult.
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I am happy that you're joining us for this series called Talking about Autism.
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This is the second episode, and I had originally predicted it was going to be about talking to others when you see autistic characteristics in them and you wonder if a diagnostic evaluation would be helpful for them?
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What happened is that, as I'm mulling around the topics for the series,
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I really couldn't get my mind off what was going to be the 3rd episode --
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which I'm going to call "navigating emotional atmospheres"... when we're talking about autism.
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And I've come to the conclusion that I'm going to cover that topic here in the second episode because I feel like it's really important to consider before we talk to other people about autistic characteristics.
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How would we navigate the emotions that are sometimes present around the topic itself?
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Last episode we talked about Talking About Autism when you are on a journey toward evaluation yourself ... when you're considering that, or when you have a new diagnosis and you might want to talk to people about your diagnosis and about autism.
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So,
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this episode is going to be focused a little bit more on navigating the complexity of people's emotional responses.
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And as we talked about in the first episode,
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it really is an emotionally charged topic and in some ways that's a bit mystifying to me.
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... the amount of emotion people have about a topic that sometimes they're not even really impacted by on a personal level,
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but talking about autism often does involve navigating emotional atmospheres.
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Um,
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and it's hard to predict what the atmosphere is going to look like or how complex it is.
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Sometimes the atmosphere may be charged because we would like to talk to someone about the topic and how it impacts,
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let's say,
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our own family,
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or how it impacts someone in the family or how it impacts you.
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And there can just be this unusual response of
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a lot of emotional charge.
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I spoke with a young woman recently who was saying that she was shocked at how angry people in her family were when she brought the topic up.
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And that is not an unusual thing for someone to share, that
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it can really charge people up.
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And um,
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sometimes you're not just bringing up a topic,
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you're bringing up all this emotional processing and content.
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Other times,
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people on this journey toward an autism diagnosis or self awareness,
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they may feel other emotions too.
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They might feel relief that they finally understand how they're wired.
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Um,
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they might share that this is such a meaningful and important thing to them that they really have a lot of emotion about the value of the diagnosis.
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Other people may really be in a different spot.
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They might be in this spot where they're processing.
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Um,
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just surprise.
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Like they were not expecting it, processing maybe grief or fear.
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Um,
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a lot of emotions can come with this diagnosis or this discussion. And for people who have been in the autistic community for a while and they have this deep passion to advocate for,
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um,
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anyone who um,
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has diversity in their neurology ... and many times that passion comes with a lot of emotional charge as well.
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And so we may have people who are so passionate about what language is used or how we should interact with others or support others or whether we should have interventions for autism or not.
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So there can also be this passionate approach to what is right or wrong to say or do for the autistic individual or within the community.
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What can happen is that the presence of this emotion can shut down the discussion before it's really launched.
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So we have something come up and it's responded to with strong emotion and it's very common,
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I think for that strong emotion to overtake the topic itself and then people in the room realize,
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oh,
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okay,
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this is not okay to talk about.
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This was a really strong,
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passionate,
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intense reaction and I feel like I'm getting the emotional message that this is not okay.
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In fact,
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I think to myself,
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if I wanted to make sure that it was not okay to talk about some particular topic and that everyone around me knew it,
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I probably would be very quick to have emotional responses.
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I'd probably be ready with criticism or judgment or correction or logical arguments.
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Um,
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maybe even just joking at someone's expense or whatever I could do to make
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the discussion so intense that people realize that needs to be shut down.
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So when I am approaching this topic of how do we say autism is okay to talk about?
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Let's bring it to the table.
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It's always okay.
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How do we create that atmosphere?
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I think one of the things we focus on is protecting the emotional atmosphere.
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Um,
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and being aware that the emotions that we are filtering into the conversation may actually really detract from someone's comfort level of bringing it up.
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It may detract from people's ability to process the topic itself.
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And so I'm just really conscious of trying to attend to that.
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Whenever I speak with someone about the topic,
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there's a lot of emotion about what to call things.
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So what language are we using?
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Some people really strongly want the language of "the autistic individual" or "the autistic" because they really self identify with that neurology.
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It's who they are.
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It's how they're knit together.
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They welcome that identification.
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Other people do not want to be known as an autistic individual.
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They feel more comfortable saying they are an individual on the spectrum or they have autism, and other people have strong emotions against that.
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So we even have this really emotional response to what words are okay to use and that can really um,
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come into the discussion as well.
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People may have very charged reactions about the,
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the peaks and valleys of anyone's journey and by that,
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I mean that in our culture,
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if someone is struggling with something and oftentimes people on a journey toward diagnosis have come to that journey because they've hit some season of struggle.
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Um,
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in our culture,
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we're very focused on fixing these struggles and sometimes that in itself can shut down discussions about complex things,
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about things that are not easily fixed.
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People on a journey probably get a lot of advice before they get to this journey of assessment for autism.
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They've probably gotten a lot of advice like,
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uh,
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"that wouldn't happen in my house" or "this is how we did it and it fixed it completely,"
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or um,
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"these are the seven steps to being free from anxiety and if you do these,
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then you shouldn't have a problem."
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Um,
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in my own personal journey,
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I really experienced that a lot.
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Um,
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as a parent, and I know this podcast is about adults,
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but the topic of emotional processing um,
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is just a very human topic across the lifespan.
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Now,
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one of the things that my son on the spectrum struggled with,
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um,
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so much was sleep and also as an infant,
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he was just very colicky and upset.
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He,
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he had a difficulty calming.
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Um,
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and a lot of things went into that,
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but um,
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we were really struggling with a sleep issue.
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And in fact he didn't End up sleeping through the night on a consistent basis until he was eight years old.
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And that was really difficult on him.
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It made all the other features more difficult for him to manage and it impacted our resilience to and our ability to um really sustain wellness as a household.
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So I remember um,
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getting this,
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he was in daycare twice a week and I went to pick him up one day when he was 10 months old and the nursery leader who had had him in her,
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they call it class in her class for um,
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from the beginning of when we started going,
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she left me a note and it said "his crying is disruptive to the class.
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Please have him better by tomorrow."
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And that is kind of an example of this,
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this mindset that things can be fixed if only you're good enough parent or if only you're committed enough to be um,
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a calm person or if only you're committed enough to be a good spouse,
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you know,
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whatever that looks like.
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And not only was I a struggling mom,
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but now I had been told that I should have this fixed.
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I should be able to fix it.
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And also another example when he was
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a couple of years old,
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two or three years old.
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I was looking into Melatonin to assist with sleep.
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And I read the reviews online for different products and a mother on their wrote this scathing comment that um using Melatonin for children is child abuse because um any good parents should know how to get their kids down for bed and that would never happen in her house.
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So it was long... long,
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that's the gist of it though.
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Um and so,
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you know,
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these messages that are so emotionally intense and not only does it bring about this shame and blame and hopelessness,
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but it also creates this atmosphere where it's clear
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it is not okay to say that you're struggling.
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Um it's not okay to bring up um that you've tried everything and you don't know what's going on um because not only are you struggling,
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but apparently it's also something that you could very well fix um, and you should fix and therefore the struggle is also your fault.
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So these emotional um... these emotional charges,
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I think really dampen our ability to give people the freedom to talk about all the ups and downs of their life,
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like life is messy and good and hard and you know,
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I feel like I can bring up any topic um and realize that it's okay to share that.
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Instead.
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I think we have a lot of emotional overtones to what's okay to bring up and what's okay to talk about.
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I remember um being struck too uh when my son was about a year old,
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one of my colleagues had an infant,
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this was her first child,
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and after I think five days after she was born,
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um my colleague brought her in and she was just this bundle of pink, cute as can be, slept the whole time.
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And you know,
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that was so different than what was happening in my home.
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And she said,
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gosh,
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I'm really a little um nervous and watchful,
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because I have to wake her up in the middle of the night for her to eat.
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You know,
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she's already sleeping through and I'm a little nervous about,
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you know,
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her nutrition, and, of course,
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here I am not sleeping for a year.
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And another colleague said to her,
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"oh,
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what a good baby you have."
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And usually I'm very measured in my speech and I think about what I say ahead of time,
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but I felt this surge going from my toes up to my ... my voice and I blurted out, "all babies are good."
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And she said,
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"well,
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yeah,
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but you know what I mean?"
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And I realized that we attach goodness to a baby,
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that's easy.
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I said,
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"you mean,
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she's easy and that's good."
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But all babies are good.
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So I think we have to watch our emotional tone so that we make sure everyone knows that every infant has value.
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Every individual is important.
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There aren't,
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you know,
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good babies and bad babies.
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There are struggling babies and babies that are not struggling and so forth across the whole lifespan,
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that our emotional charge can sometimes make people feel less than good, less than valued.
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And so I think that really became apparent to me and I'm much more aware of protecting the emotional atmosphere when I'm speaking to someone to really protect that they understand that they are important and that we're having this tough discussion because their well being is important.
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What I started to think about is that even though I want people to be have the freedom and the space to be where they're at,
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whether they're celebrating this,
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whether they're relieved,
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whether they're struggling,
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whether they're upset about the diagnosis or the concept,
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I want to give people space,
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they don't have to react in a certain way in order to be good or in order to please me just because I'm in a different place.
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On the other hand,
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I really want to balance that freedom to feel with my own awareness of protecting the emotional atmosphere.
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There are some emotions that I really um try to protect people from during our conversations and The Big one I would say that I never feel is helpful in the conversation is shame.
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Um I just feel like that is so easy.
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Mhm uh emotionally to bring into conversations when someone is struggling that I really try to be very careful to protect what's going on from any shame.
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Um and I would also say emotions like hopelessness,
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helplessness,
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worthlessness, and it's okay for people to feel fear...
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But I do try to protect from that just global fear that doesn't leave,
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you know,
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this is not a season of fear.
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This is "I am afraid of a diagnosis in general."
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And so I try to have some protection for that.
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By protection.
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I mean that I try to really monitor my own language.
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I try to acknowledge what people are saying,
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but I do point out,
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um,
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when I feel like an emotion is really just working against their wellness,
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you know,
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it sounds like this is about shame and there is no criticism here.
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This is not a criticism.
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This is to increase your power to understand yourself to be able to get centered when you're just feeling off center.
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This is not a criticism.
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So I may say things like that to protect the atmosphere.
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I also try to explain to people if they are in a point of struggle about the topic,
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let's say I've brought it up.
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They're struggling with the topic.
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I try to explain why I bring up what feels like a difficult topic to them and my memory goes back to when my son was in preschool.
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Uh,
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it was an early intervention preschool and he had started showing at the age of three some additional um,
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characteristics that,
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you know,
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we later realized were part of the autism and I in a parent teacher meeting.
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There were two teachers in me and I said,
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have you started seeing these kinds of things for him?
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Because we're seeing that a lot.
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And I remember vividly that they both looked at each other,
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both teachers and didn't say anything and then looked at me and said,
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well we'll just start to work on that... they hadn't seen it.
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And I knew darrn well that they knew something that I didn't and that it didn't feel to them like it was okay to bring up and then I felt too afraid to push it because I'm like,
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oh,
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if this is not okay to talk about,
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do I really want to know?
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But to be honest,
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I needed to know I needed that information.
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It didn't help me to be in the dark for two more years about what we could have been really understanding better.
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Um So when I'm talking to someone in that position,
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I may say something like,
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you know,
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it's because your well being is so important that I will always bring up topics that impact your well being,
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even if they're ... they feel tough because you are important and it's important to talk about these things and I'm a person that will do that with you.
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Um So I also try to bring it to the table when it's about to be shut down again,
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tying it to their their well being,
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their worth and my value for them.
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I've also I started to think,
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you know,
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what do I want people to leave a conversation with me with?
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What do I want him to leave with?
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Well,
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I'd like them of course to leave with some information.
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But even more so I realize that what is most impactful is I want them to leave knowing that they are valued.
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I want them to leave without fear.
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I want them to feel empowered and courageous and supported.
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So when I am interacting with them about the topic,
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am I providing data and information of course,
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but I'm very watchful that ultimately my goal is to have them sit with me in this experience and to be able to leave with a sense of freedom and being supported and for them to leave and say,
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I feel like I was seen because that's really important.
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I want to share a personal experience,
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just two to round out this episode.
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And um,
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I got to the point where I did want to process this with my son's pediatrician When he was about four.
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And I came to that on my own by research and watching him.
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And um I decided,
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you know,
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it's time to talk about this.
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And my reluctance to talk about it with him was because I know that even physicians get emotionally charged about the topic and I did not want to get into any kind of push or pull and I did not know his opinion.
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He was our third pediatrician to be honest and I just did not know him that well.
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And because I knew it might be a topic that might get shut down or there might be an emotional charge.
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I practiced what I was going to say ahead of time.
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Like a lot.
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You know how you feel like I'm going in.
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I have this one appointment.
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I don't know this person,
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but I need to make sure I'm thinking clearly enough to get these things across.
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So I practiced and I wrote things down and the appointment got rescheduled three times.
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So it's one of those things and you're waiting.
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And I went to the appointment.
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So I was kind of armed with,
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you know what I wanted to say?
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But I was very watchful about how this would go.
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And I also had received so much advice for so long without really getting assistance.
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And I didn't want that to be the case either.
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I really wanted to talk.
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I wanted someone to talk with me about a difficult thing and a complex thing and I wanted um something substantive to do next.
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So we discussed a lot of things.
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Um He referred us to the autism diagnostic clinic at our local easter seals.
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Uh and then that wait list started of course.
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Um So did he give me information?
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Yes.
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Did he give me a plan?
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Absolutely.
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But when I left that office,
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what was life changing for me ... was mostly something else.
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And what it was was that at the end of our talk... and I still get emotional about this.
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At the end of our talk,
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he looked at me and he said,
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"I hope,
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you know you're a good mom"... and I had practiced what to say in this session.
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But I,
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my mouth hung open.
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I was literally speechless and I realized in that moment that nobody had ever said that to me and I knew darn well that if I asked my friends or my family,
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do you think I'm a good mom?
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They would say,
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well of course you are.
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That goes without saying.
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But I realized it doesn't,
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it doesn't go without saying because we get all these messages that we're doing something wrong or our struggle would be gone if we knew what we were doing.
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Nobody had ever said,
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I hope,
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you know,
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you're a good mom that has never left me.
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It took no skill to say he didn't have to be an autism expert and he was not.
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But when I left the emotional atmosphere had been protected and I left feeling seen and heard and valued.
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And that gave me the courage to keep going to talk about something that is complex and emotionally charged.
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And sometimes what we need to make people understand is that we see the heart that they have for their kids or we see all the detective work they've done to try to figure themselves out that we see their value.
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We see them.
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We honor them.
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We respect them.
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Um,
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and that's something we think goes without saying,
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but it really doesn't.
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And so that's what I mean by navigating emotional atmospheres and protecting emotional atmospheres.
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That sometimes the one thing we can do to open up a discussion where people feel free and safe enough to talk about something complex is to say,
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I see you and you're important and I'm glad you're here.
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And let's talk about it.
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I hope you'll join me next time for our final episode in the series,
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which is about talking about autism to others when you see autistic characteristics in them.
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But but they're not expecting this discussion.
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This is,
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you know,
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something you want to bring up.
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But should I bring it up and how could I bring it up?
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Um That will be our next discussion and I will see you then.