Pergi ke luar talian dengan aplikasi Player FM !
Talking About Autism: Navigating Emotional Atmospheres
Manage episode 323861383 series 3315758
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:
00:00:05,740 --> 00:00:06,480
Hello,
3
00:00:06,490 --> 00:00:12,460
This is Dr Theresa Regan. Thank you for joining me for this episode of Autism in the Adult.
4
00:00:13,140 --> 00:00:19,260
I am happy that you're joining us for this series called Talking about Autism.
5
00:00:19,270 --> 00:00:37,150
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?
6
00:00:38,740 --> 00:00:44,170
What happened is that, as I'm mulling around the topics for the series,
7
00:00:44,180 --> 00:00:49,560
I really couldn't get my mind off what was going to be the 3rd episode --
8
00:00:50,140 --> 00:00:56,260
which I'm going to call "navigating emotional atmospheres"... when we're talking about autism.
9
00:00:57,040 --> 00:01:13,790
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.
10
00:01:13,790 --> 00:01:20,860
How would we navigate the emotions that are sometimes present around the topic itself?
11
00:01:21,640 --> 00:01:39,160
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.
12
00:01:40,640 --> 00:01:40,960
So,
13
00:01:40,960 --> 00:01:50,260
this episode is going to be focused a little bit more on navigating the complexity of people's emotional responses.
14
00:01:50,740 --> 00:01:54,850
And as we talked about in the first episode,
15
00:01:54,850 --> 00:02:03,690
it really is an emotionally charged topic and in some ways that's a bit mystifying to me.
16
00:02:03,700 --> 00:02:12,650
... the amount of emotion people have about a topic that sometimes they're not even really impacted by on a personal level,
18
00:02:15,840 --> 00:02:22,160
but talking about autism often does involve navigating emotional atmospheres.
19
00:02:22,780 --> 00:02:23,000
Um,
20
00:02:23,000 --> 00:02:27,760
and it's hard to predict what the atmosphere is going to look like or how complex it is.
21
00:02:29,040 --> 00:02:38,010
Sometimes the atmosphere may be charged because we would like to talk to someone about the topic and how it impacts,
22
00:02:38,010 --> 00:02:38,690
let's say,
23
00:02:38,690 --> 00:02:40,110
our own family,
24
00:02:40,120 --> 00:02:44,600
or how it impacts someone in the family or how it impacts you.
25
00:02:44,610 --> 00:02:51,730
And there can just be this unusual response of
26
00:02:51,740 --> 00:02:53,630
a lot of emotional charge.
27
00:02:53,640 --> 00:03:04,360
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.
28
00:03:04,940 --> 00:03:10,160
And that is not an unusual thing for someone to share, that
29
00:03:10,170 --> 00:03:12,310
it can really charge people up.
30
00:03:12,320 --> 00:03:13,660
And um,
31
00:03:14,350 --> 00:03:17,440
sometimes you're not just bringing up a topic,
32
00:03:17,450 --> 00:03:22,560
you're bringing up all this emotional processing and content.
33
00:03:24,240 --> 00:03:25,270
Other times,
34
00:03:25,270 --> 00:03:30,560
people on this journey toward an autism diagnosis or self awareness,
35
00:03:30,940 --> 00:03:33,150
they may feel other emotions too.
36
00:03:33,150 --> 00:03:39,460
They might feel relief that they finally understand how they're wired.
37
00:03:39,940 --> 00:03:40,330
Um,
38
00:03:40,330 --> 00:03:51,550
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.
39
00:03:52,140 --> 00:03:55,130
Other people may really be in a different spot.
40
00:03:55,130 --> 00:03:59,150
They might be in this spot where they're processing.
41
00:03:59,160 --> 00:03:59,740
Um,
42
00:03:59,750 --> 00:04:01,040
just surprise.
43
00:04:01,040 --> 00:04:05,950
Like they were not expecting it, processing maybe grief or fear.
44
00:04:05,960 --> 00:04:06,730
Um,
45
00:04:06,740 --> 00:04:24,830
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,
46
00:04:24,840 --> 00:04:25,670
um,
47
00:04:25,680 --> 00:04:27,930
anyone who um,
48
00:04:27,940 --> 00:04:37,810
has diversity in their neurology ... and many times that passion comes with a lot of emotional charge as well.
49
00:04:38,080 --> 00:04:55,940
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.
50
00:04:55,950 --> 00:05:09,050
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.
51
00:05:11,240 --> 00:05:22,150
What can happen is that the presence of this emotion can shut down the discussion before it's really launched.
52
00:05:22,540 --> 00:05:31,980
So we have something come up and it's responded to with strong emotion and it's very common,
53
00:05:31,980 --> 00:05:39,190
I think for that strong emotion to overtake the topic itself and then people in the room realize,
54
00:05:39,200 --> 00:05:40,000
oh,
55
00:05:40,010 --> 00:05:40,570
okay,
56
00:05:40,570 --> 00:05:42,960
this is not okay to talk about.
57
00:05:42,970 --> 00:05:45,830
This was a really strong,
58
00:05:45,840 --> 00:05:47,050
passionate,
59
00:05:47,580 --> 00:05:54,850
intense reaction and I feel like I'm getting the emotional message that this is not okay.
60
00:05:56,140 --> 00:05:56,830
In fact,
61
00:05:56,840 --> 00:05:58,530
I think to myself,
62
00:05:58,540 --> 00:06:06,830
if I wanted to make sure that it was not okay to talk about some particular topic and that everyone around me knew it,
63
00:06:06,840 --> 00:06:13,160
I probably would be very quick to have emotional responses.
64
00:06:13,170 --> 00:06:20,350
I'd probably be ready with criticism or judgment or correction or logical arguments.
65
00:06:20,740 --> 00:06:21,440
Um,
66
00:06:21,450 --> 00:06:27,850
maybe even just joking at someone's expense or whatever I could do to make
67
00:06:28,740 --> 00:06:35,360
the discussion so intense that people realize that needs to be shut down.
68
00:06:35,740 --> 00:06:43,170
So when I am approaching this topic of how do we say autism is okay to talk about?
69
00:06:43,170 --> 00:06:44,830
Let's bring it to the table.
70
00:06:44,830 --> 00:06:46,160
It's always okay.
71
00:06:46,160 --> 00:06:48,100
How do we create that atmosphere?
72
00:06:48,110 --> 00:06:54,350
I think one of the things we focus on is protecting the emotional atmosphere.
73
00:06:54,840 --> 00:06:55,610
Um,
74
00:06:55,620 --> 00:07:10,600
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.
75
00:07:10,670 --> 00:07:14,860
It may detract from people's ability to process the topic itself.
76
00:07:15,240 --> 00:07:21,230
And so I'm just really conscious of trying to attend to that.
77
00:07:21,240 --> 00:07:24,060
Whenever I speak with someone about the topic,
78
00:07:28,340 --> 00:07:31,780
there's a lot of emotion about what to call things.
79
00:07:31,790 --> 00:07:34,310
So what language are we using?
80
00:07:34,320 --> 00:07:46,700
Some people really strongly want the language of "the autistic individual" or "the autistic" because they really self identify with that neurology.
81
00:07:46,700 --> 00:07:47,620
It's who they are.
82
00:07:47,620 --> 00:07:49,000
It's how they're knit together.
83
00:07:49,340 --> 00:07:51,650
They welcome that identification.
84
00:07:52,040 --> 00:07:57,090
Other people do not want to be known as an autistic individual.
85
00:07:57,090 --> 00:08:07,660
They feel more comfortable saying they are an individual on the spectrum or they have autism, and other people have strong emotions against that.
86
00:08:07,940 --> 00:08:18,120
So we even have this really emotional response to what words are okay to use and that can really um,
87
00:08:18,130 --> 00:08:20,360
come into the discussion as well.
88
00:08:21,740 --> 00:08:29,510
People may have very charged reactions about the,
89
00:08:29,790 --> 00:08:33,420
the peaks and valleys of anyone's journey and by that,
90
00:08:33,420 --> 00:08:37,460
I mean that in our culture,
91
00:08:37,470 --> 00:08:51,060
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.
92
00:08:51,440 --> 00:08:52,550
Um,
93
00:08:52,940 --> 00:08:54,130
in our culture,
94
00:08:54,130 --> 00:09:07,990
we're very focused on fixing these struggles and sometimes that in itself can shut down discussions about complex things,
95
00:09:07,990 --> 00:09:10,660
about things that are not easily fixed.
96
00:09:12,540 --> 00:09:21,670
People on a journey probably get a lot of advice before they get to this journey of assessment for autism.
97
00:09:21,740 --> 00:09:24,560
They've probably gotten a lot of advice like,
98
00:09:25,040 --> 00:09:25,370
uh,
99
00:09:25,380 --> 00:09:30,900
"that wouldn't happen in my house" or "this is how we did it and it fixed it completely,"
100
00:09:30,910 --> 00:09:32,540
or um,
101
00:09:32,550 --> 00:09:38,510
"these are the seven steps to being free from anxiety and if you do these,
102
00:09:38,520 --> 00:09:40,660
then you shouldn't have a problem."
103
00:09:43,040 --> 00:09:43,400
Um,
104
00:09:43,410 --> 00:09:45,270
in my own personal journey,
105
00:09:45,270 --> 00:09:47,540
I really experienced that a lot.
106
00:09:47,550 --> 00:09:48,300
Um,
107
00:09:48,310 --> 00:09:51,940
as a parent, and I know this podcast is about adults,
108
00:09:51,940 --> 00:09:56,750
but the topic of emotional processing um,
109
00:09:56,760 --> 00:10:00,460
is just a very human topic across the lifespan.
110
00:10:01,140 --> 00:10:01,500
Now,
111
00:10:01,500 --> 00:10:05,210
one of the things that my son on the spectrum struggled with,
112
00:10:05,220 --> 00:10:05,750
um,
113
00:10:05,760 --> 00:10:09,090
so much was sleep and also as an infant,
114
00:10:09,090 --> 00:10:12,310
he was just very colicky and upset.
115
00:10:12,310 --> 00:10:12,500
He,
116
00:10:12,500 --> 00:10:14,960
he had a difficulty calming.
117
00:10:15,340 --> 00:10:16,110
Um,
118
00:10:16,120 --> 00:10:18,550
and a lot of things went into that,
119
00:10:18,550 --> 00:10:20,050
but um,
120
00:10:20,050 --> 00:10:23,880
we were really struggling with a sleep issue.
121
00:10:23,880 --> 00:10:30,260
And in fact he didn't End up sleeping through the night on a consistent basis until he was eight years old.
122
00:10:30,740 --> 00:10:34,020
And that was really difficult on him.
123
00:10:34,030 --> 00:10:48,410
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.
124
00:10:48,410 --> 00:10:50,550
So I remember um,
125
00:10:50,560 --> 00:10:52,260
getting this,
126
00:10:52,270 --> 00:11:07,050
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,
127
00:11:07,060 --> 00:11:10,360
they call it class in her class for um,
128
00:11:10,370 --> 00:11:13,020
from the beginning of when we started going,
129
00:11:13,530 --> 00:11:21,880
she left me a note and it said "his crying is disruptive to the class.
130
00:11:22,440 --> 00:11:25,050
Please have him better by tomorrow."
131
00:11:26,030 --> 00:11:31,570
And that is kind of an example of this,
132
00:11:33,740 --> 00:11:46,730
this mindset that things can be fixed if only you're good enough parent or if only you're committed enough to be um,
133
00:11:46,740 --> 00:11:52,960
a calm person or if only you're committed enough to be a good spouse,
134
00:11:53,040 --> 00:11:53,410
you know,
135
00:11:53,410 --> 00:11:54,750
whatever that looks like.
136
00:11:55,590 --> 00:12:00,270
And not only was I a struggling mom,
137
00:12:00,290 --> 00:12:05,210
but now I had been told that I should have this fixed.
138
00:12:05,220 --> 00:12:08,260
I should be able to fix it.
139
00:12:09,010 --> 00:12:14,770
And also another example when he was
140
00:12:14,780 --> 00:12:16,200
a couple of years old,
141
00:12:16,200 --> 00:12:17,470
two or three years old.
142
00:12:17,480 --> 00:12:22,840
I was looking into Melatonin to assist with sleep.
143
00:12:22,850 --> 00:12:49,260
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.
144
00:12:49,640 --> 00:12:52,450
So it was long... long,
145
00:12:52,450 --> 00:12:54,130
that's the gist of it though.
146
00:12:54,140 --> 00:12:55,850
Um and so,
147
00:12:55,860 --> 00:12:56,420
you know,
148
00:12:56,420 --> 00:13:05,290
these messages that are so emotionally intense and not only does it bring about this shame and blame and hopelessness,
149
00:13:05,300 --> 00:13:09,780
but it also creates this atmosphere where it's clear
150
00:13:09,780 --> 00:13:12,310
it is not okay to say that you're struggling.
151
00:13:12,640 --> 00:13:24,460
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,
152
00:13:24,460 --> 00:13:34,460
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.
153
00:13:34,940 --> 00:13:39,680
So these emotional um... these emotional charges,
154
00:13:39,690 --> 00:13:48,370
I think really dampen our ability to give people the freedom to talk about all the ups and downs of their life,
155
00:13:48,370 --> 00:13:53,590
like life is messy and good and hard and you know,
156
00:13:53,590 --> 00:14:00,860
I feel like I can bring up any topic um and realize that it's okay to share that.
157
00:14:01,340 --> 00:14:02,320
Instead.
158
00:14:02,320 --> 00:14:10,550
I think we have a lot of emotional overtones to what's okay to bring up and what's okay to talk about.
159
00:14:12,640 --> 00:14:19,860
I remember um being struck too uh when my son was about a year old,
160
00:14:20,440 --> 00:14:23,870
one of my colleagues had an infant,
161
00:14:23,870 --> 00:14:25,170
this was her first child,
162
00:14:25,180 --> 00:14:29,840
and after I think five days after she was born,
163
00:14:29,850 --> 00:14:39,100
um my colleague brought her in and she was just this bundle of pink, cute as can be, slept the whole time.
164
00:14:39,600 --> 00:14:41,610
And you know,
165
00:14:41,610 --> 00:14:45,860
that was so different than what was happening in my home.
166
00:14:46,340 --> 00:14:47,890
And she said,
167
00:14:47,890 --> 00:14:48,360
gosh,
168
00:14:48,360 --> 00:14:52,560
I'm really a little um nervous and watchful,
169
00:14:52,560 --> 00:14:56,110
because I have to wake her up in the middle of the night for her to eat.
170
00:14:56,120 --> 00:14:56,660
You know,
171
00:14:56,660 --> 00:15:00,210
she's already sleeping through and I'm a little nervous about,
172
00:15:00,220 --> 00:15:00,550
you know,
173
00:15:00,550 --> 00:15:02,780
her nutrition, and, of course,
174
00:15:02,790 --> 00:15:06,760
here I am not sleeping for a year.
175
00:15:07,240 --> 00:15:11,010
And another colleague said to her,
176
00:15:11,250 --> 00:15:11,690
"oh,
177
00:15:11,690 --> 00:15:13,810
what a good baby you have."
178
00:15:14,440 --> 00:15:21,250
And usually I'm very measured in my speech and I think about what I say ahead of time,
179
00:15:21,250 --> 00:15:33,860
but I felt this surge going from my toes up to my ... my voice and I blurted out, "all babies are good."
180
00:15:35,140 --> 00:15:36,560
And she said,
181
00:15:36,560 --> 00:15:37,340
"well,
182
00:15:37,360 --> 00:15:37,950
yeah,
183
00:15:37,950 --> 00:15:39,360
but you know what I mean?"
184
00:15:39,840 --> 00:15:48,370
And I realized that we attach goodness to a baby,
185
00:15:48,370 --> 00:15:49,860
that's easy.
186
00:15:50,590 --> 00:15:51,130
I said,
187
00:15:51,130 --> 00:15:51,520
"you mean,
188
00:15:51,520 --> 00:15:53,950
she's easy and that's good."
189
00:15:55,040 --> 00:15:57,020
But all babies are good.
190
00:15:57,030 --> 00:16:08,250
So I think we have to watch our emotional tone so that we make sure everyone knows that every infant has value.
191
00:16:08,260 --> 00:16:11,660
Every individual is important.
192
00:16:12,120 --> 00:16:13,060
There aren't,
193
00:16:13,070 --> 00:16:13,960
you know,
194
00:16:14,640 --> 00:16:16,990
good babies and bad babies.
195
00:16:17,440 --> 00:16:26,460
There are struggling babies and babies that are not struggling and so forth across the whole lifespan,
196
00:16:26,840 --> 00:16:35,150
that our emotional charge can sometimes make people feel less than good, less than valued.
197
00:16:36,060 --> 00:17:00,150
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.
198
00:17:01,840 --> 00:17:12,020
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,
199
00:17:12,020 --> 00:17:13,920
whether they're celebrating this,
200
00:17:13,930 --> 00:17:15,600
whether they're relieved,
201
00:17:15,600 --> 00:17:16,960
whether they're struggling,
202
00:17:17,540 --> 00:17:23,120
whether they're upset about the diagnosis or the concept,
203
00:17:23,130 --> 00:17:25,450
I want to give people space,
204
00:17:25,630 --> 00:17:35,460
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.
205
00:17:36,840 --> 00:17:38,220
On the other hand,
206
00:17:38,230 --> 00:17:48,060
I really want to balance that freedom to feel with my own awareness of protecting the emotional atmosphere.
207
00:17:49,140 --> 00:18:09,170
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.
208
00:18:10,240 --> 00:18:15,780
Um I just feel like that is so easy.
209
00:18:16,940 --> 00:18:29,670
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.
210
00:18:30,140 --> 00:18:36,760
Um and I would also say emotions like hopelessness,
211
00:18:36,760 --> 00:18:37,620
helplessness,
212
00:18:37,620 --> 00:18:42,780
worthlessness, and it's okay for people to feel fear...
213
00:18:42,780 --> 00:18:48,380
But I do try to protect from that just global fear that doesn't leave,
214
00:18:48,390 --> 00:18:48,680
you know,
215
00:18:48,680 --> 00:18:50,360
this is not a season of fear.
216
00:18:50,360 --> 00:18:56,230
This is "I am afraid of a diagnosis in general."
217
00:18:56,640 --> 00:19:01,100
And so I try to have some protection for that.
218
00:19:02,740 --> 00:19:04,010
By protection.
219
00:19:04,020 --> 00:19:07,640
I mean that I try to really monitor my own language.
220
00:19:07,650 --> 00:19:10,300
I try to acknowledge what people are saying,
221
00:19:10,300 --> 00:19:11,770
but I do point out,
222
00:19:12,340 --> 00:19:13,110
um,
223
00:19:13,120 --> 00:19:18,270
when I feel like an emotion is really just working against their wellness,
224
00:19:18,640 --> 00:19:19,080
you know,
225
00:19:19,080 --> 00:19:23,950
it sounds like this is about shame and there is no criticism here.
226
00:19:24,440 --> 00:19:26,460
This is not a criticism.
227
00:19:26,920 --> 00:19:38,230
This is to increase your power to understand yourself to be able to get centered when you're just feeling off center.
228
00:19:39,010 --> 00:19:40,860
This is not a criticism.
229
00:19:41,740 --> 00:19:46,170
So I may say things like that to protect the atmosphere.
230
00:19:51,740 --> 00:20:00,630
I also try to explain to people if they are in a point of struggle about the topic,
231
00:20:00,640 --> 00:20:02,360
let's say I've brought it up.
232
00:20:03,440 --> 00:20:05,360
They're struggling with the topic.
233
00:20:06,950 --> 00:20:22,850
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.
234
00:20:23,440 --> 00:20:23,770
Uh,
235
00:20:23,780 --> 00:20:33,270
it was an early intervention preschool and he had started showing at the age of three some additional um,
236
00:20:35,340 --> 00:20:37,860
characteristics that,
237
00:20:38,360 --> 00:20:38,660
you know,
238
00:20:38,660 --> 00:20:45,520
we later realized were part of the autism and I in a parent teacher meeting.
239
00:20:45,520 --> 00:20:48,360
There were two teachers in me and I said,
240
00:20:48,360 --> 00:20:51,470
have you started seeing these kinds of things for him?
241
00:20:51,470 --> 00:20:52,860
Because we're seeing that a lot.
242
00:20:53,330 --> 00:20:58,020
And I remember vividly that they both looked at each other,
243
00:20:58,020 --> 00:21:03,700
both teachers and didn't say anything and then looked at me and said,
244
00:21:03,700 --> 00:21:07,050
well we'll just start to work on that... they hadn't seen it.
245
00:21:07,940 --> 00:21:27,030
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,
246
00:21:27,040 --> 00:21:27,530
oh,
247
00:21:27,800 --> 00:21:29,810
if this is not okay to talk about,
248
00:21:29,810 --> 00:21:31,350
do I really want to know?
249
00:21:31,840 --> 00:21:33,180
But to be honest,
250
00:21:33,190 --> 00:21:36,850
I needed to know I needed that information.
251
00:21:37,240 --> 00:21:46,050
It didn't help me to be in the dark for two more years about what we could have been really understanding better.
252
00:21:46,940 --> 00:21:51,350
Um So when I'm talking to someone in that position,
253
00:21:52,730 --> 00:21:54,560
I may say something like,
254
00:21:54,940 --> 00:21:55,680
you know,
255
00:21:55,680 --> 00:22:06,460
it's because your well being is so important that I will always bring up topics that impact your well being,
256
00:22:06,460 --> 00:22:20,270
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.
257
00:22:21,540 --> 00:22:30,390
Um So I also try to bring it to the table when it's about to be shut down again,
258
00:22:30,390 --> 00:22:34,360
tying it to their their well being,
259
00:22:34,360 --> 00:22:36,780
their worth and my value for them.
260
00:22:38,350 --> 00:22:41,730
I've also I started to think,
261
00:22:43,340 --> 00:22:44,110
you know,
262
00:22:44,120 --> 00:22:52,020
what do I want people to leave a conversation with me with?
263
00:22:52,020 --> 00:22:53,640
What do I want him to leave with?
264
00:22:53,700 --> 00:22:54,040
Well,
265
00:22:54,050 --> 00:22:57,080
I'd like them of course to leave with some information.
266
00:22:57,080 --> 00:23:09,860
But even more so I realize that what is most impactful is I want them to leave knowing that they are valued.
267
00:23:10,440 --> 00:23:12,990
I want them to leave without fear.
268
00:23:13,540 --> 00:23:18,360
I want them to feel empowered and courageous and supported.
269
00:23:19,540 --> 00:23:24,670
So when I am interacting with them about the topic,
270
00:23:25,240 --> 00:23:28,770
am I providing data and information of course,
271
00:23:30,040 --> 00:23:54,770
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,
272
00:23:55,940 --> 00:24:03,450
I feel like I was seen because that's really important.
273
00:24:05,540 --> 00:24:09,610
I want to share a personal experience,
274
00:24:10,160 --> 00:24:15,950
just two to round out this episode.
275
00:24:17,040 --> 00:24:19,050
And um,
276
00:24:21,540 --> 00:24:35,850
I got to the point where I did want to process this with my son's pediatrician When he was about four.
277
00:24:36,340 --> 00:24:44,050
And I came to that on my own by research and watching him.
278
00:24:44,050 --> 00:24:47,680
And um I decided,
279
00:24:47,830 --> 00:24:48,290
you know,
280
00:24:48,290 --> 00:24:50,250
it's time to talk about this.
281
00:24:50,570 --> 00:25:11,550
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.
282
00:25:11,560 --> 00:25:19,450
He was our third pediatrician to be honest and I just did not know him that well.
283
00:25:20,330 --> 00:25:30,670
And because I knew it might be a topic that might get shut down or there might be an emotional charge.
284
00:25:32,340 --> 00:25:35,220
I practiced what I was going to say ahead of time.
285
00:25:35,230 --> 00:25:36,780
Like a lot.
286
00:25:36,790 --> 00:25:39,510
You know how you feel like I'm going in.
287
00:25:39,520 --> 00:25:41,550
I have this one appointment.
288
00:25:41,560 --> 00:25:43,110
I don't know this person,
289
00:25:43,120 --> 00:25:47,760
but I need to make sure I'm thinking clearly enough to get these things across.
290
00:25:48,640 --> 00:25:54,580
So I practiced and I wrote things down and the appointment got rescheduled three times.
291
00:25:54,590 --> 00:25:57,360
So it's one of those things and you're waiting.
292
00:25:57,740 --> 00:26:02,610
And I went to the appointment.
293
00:26:02,610 --> 00:26:04,760
So I was kind of armed with,
294
00:26:05,540 --> 00:26:08,580
you know what I wanted to say?
295
00:26:08,580 --> 00:26:13,340
But I was very watchful about how this would go.
296
00:26:14,120 --> 00:26:24,600
And I also had received so much advice for so long without really getting assistance.
297
00:26:24,610 --> 00:26:28,540
And I didn't want that to be the case either.
298
00:26:28,790 --> 00:26:32,460
I really wanted to talk.
299
00:26:32,470 --> 00:26:41,860
I wanted someone to talk with me about a difficult thing and a complex thing and I wanted um something substantive to do next.
300
00:26:43,040 --> 00:26:46,370
So we discussed a lot of things.
301
00:26:46,380 --> 00:26:52,850
Um He referred us to the autism diagnostic clinic at our local easter seals.
302
00:26:53,340 --> 00:26:55,990
Uh and then that wait list started of course.
303
00:26:56,540 --> 00:26:59,520
Um So did he give me information?
304
00:26:59,520 --> 00:27:00,310
Yes.
305
00:27:00,320 --> 00:27:01,960
Did he give me a plan?
306
00:27:01,960 --> 00:27:02,940
Absolutely.
307
00:27:02,950 --> 00:27:05,960
But when I left that office,
308
00:27:06,640 --> 00:27:11,210
what was life changing for me ... was mostly something else.
309
00:27:12,440 --> 00:27:20,800
And what it was was that at the end of our talk... and I still get emotional about this.
310
00:27:20,850 --> 00:27:22,390
At the end of our talk,
311
00:27:22,390 --> 00:27:24,110
he looked at me and he said,
312
00:27:24,110 --> 00:27:24,590
"I hope,
313
00:27:24,590 --> 00:27:33,710
you know you're a good mom"... and I had practiced what to say in this session.
314
00:27:33,710 --> 00:27:35,160
But I,
315
00:27:35,300 --> 00:27:36,600
my mouth hung open.
316
00:27:36,600 --> 00:27:57,550
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,
317
00:27:57,550 --> 00:27:58,800
do you think I'm a good mom?
318
00:27:58,800 --> 00:27:59,320
They would say,
319
00:27:59,320 --> 00:28:01,300
well of course you are.
320
00:28:01,330 --> 00:28:02,860
That goes without saying.
321
00:28:04,440 --> 00:28:06,350
But I realized it doesn't,
322
00:28:06,590 --> 00:28:19,200
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.
323
00:28:21,540 --> 00:28:23,550
Nobody had ever said,
324
00:28:24,740 --> 00:28:25,190
I hope,
325
00:28:25,190 --> 00:28:25,450
you know,
326
00:28:25,450 --> 00:28:36,770
you're a good mom that has never left me.
327
00:28:37,240 --> 00:28:43,700
It took no skill to say he didn't have to be an autism expert and he was not.
328
00:28:44,840 --> 00:28:54,790
But when I left the emotional atmosphere had been protected and I left feeling seen and heard and valued.
329
00:28:55,840 --> 00:29:07,160
And that gave me the courage to keep going to talk about something that is complex and emotionally charged.
330
00:29:07,840 --> 00:29:26,480
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.
331
00:29:26,480 --> 00:29:27,560
We see them.
332
00:29:28,640 --> 00:29:29,660
We honor them.
333
00:29:29,660 --> 00:29:31,060
We respect them.
334
00:29:32,440 --> 00:29:32,970
Um,
335
00:29:32,980 --> 00:29:35,600
and that's something we think goes without saying,
336
00:29:35,600 --> 00:29:36,890
but it really doesn't.
337
00:29:36,900 --> 00:29:45,910
And so that's what I mean by navigating emotional atmospheres and protecting emotional atmospheres.
338
00:29:46,600 --> 00:30:00,420
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,
339
00:30:00,420 --> 00:30:05,270
I see you and you're important and I'm glad you're here.
340
00:30:05,460 --> 00:30:06,560
And let's talk about it.
341
00:30:10,240 --> 00:30:15,330
I hope you'll join me next time for our final episode in the series,
342
00:30:15,340 --> 00:30:22,510
which is about talking about autism to others when you see autistic characteristics in them.
343
00:30:22,510 --> 00:30:25,240
But but they're not expecting this discussion.
344
00:30:25,240 --> 00:30:25,860
This is,
345
00:30:26,040 --> 00:30:26,380
you know,
346
00:30:26,380 --> 00:30:27,720
something you want to bring up.
347
00:30:27,730 --> 00:30:30,660
But should I bring it up and how could I bring it up?
348
00:30:30,940 --> 00:30:40,860
Um That will be our next discussion and I will see you then.
67 episod
Manage episode 323861383 series 3315758
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:
00:00:05,740 --> 00:00:06,480
Hello,
3
00:00:06,490 --> 00:00:12,460
This is Dr Theresa Regan. Thank you for joining me for this episode of Autism in the Adult.
4
00:00:13,140 --> 00:00:19,260
I am happy that you're joining us for this series called Talking about Autism.
5
00:00:19,270 --> 00:00:37,150
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?
6
00:00:38,740 --> 00:00:44,170
What happened is that, as I'm mulling around the topics for the series,
7
00:00:44,180 --> 00:00:49,560
I really couldn't get my mind off what was going to be the 3rd episode --
8
00:00:50,140 --> 00:00:56,260
which I'm going to call "navigating emotional atmospheres"... when we're talking about autism.
9
00:00:57,040 --> 00:01:13,790
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.
10
00:01:13,790 --> 00:01:20,860
How would we navigate the emotions that are sometimes present around the topic itself?
11
00:01:21,640 --> 00:01:39,160
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.
12
00:01:40,640 --> 00:01:40,960
So,
13
00:01:40,960 --> 00:01:50,260
this episode is going to be focused a little bit more on navigating the complexity of people's emotional responses.
14
00:01:50,740 --> 00:01:54,850
And as we talked about in the first episode,
15
00:01:54,850 --> 00:02:03,690
it really is an emotionally charged topic and in some ways that's a bit mystifying to me.
16
00:02:03,700 --> 00:02:12,650
... the amount of emotion people have about a topic that sometimes they're not even really impacted by on a personal level,
18
00:02:15,840 --> 00:02:22,160
but talking about autism often does involve navigating emotional atmospheres.
19
00:02:22,780 --> 00:02:23,000
Um,
20
00:02:23,000 --> 00:02:27,760
and it's hard to predict what the atmosphere is going to look like or how complex it is.
21
00:02:29,040 --> 00:02:38,010
Sometimes the atmosphere may be charged because we would like to talk to someone about the topic and how it impacts,
22
00:02:38,010 --> 00:02:38,690
let's say,
23
00:02:38,690 --> 00:02:40,110
our own family,
24
00:02:40,120 --> 00:02:44,600
or how it impacts someone in the family or how it impacts you.
25
00:02:44,610 --> 00:02:51,730
And there can just be this unusual response of
26
00:02:51,740 --> 00:02:53,630
a lot of emotional charge.
27
00:02:53,640 --> 00:03:04,360
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.
28
00:03:04,940 --> 00:03:10,160
And that is not an unusual thing for someone to share, that
29
00:03:10,170 --> 00:03:12,310
it can really charge people up.
30
00:03:12,320 --> 00:03:13,660
And um,
31
00:03:14,350 --> 00:03:17,440
sometimes you're not just bringing up a topic,
32
00:03:17,450 --> 00:03:22,560
you're bringing up all this emotional processing and content.
33
00:03:24,240 --> 00:03:25,270
Other times,
34
00:03:25,270 --> 00:03:30,560
people on this journey toward an autism diagnosis or self awareness,
35
00:03:30,940 --> 00:03:33,150
they may feel other emotions too.
36
00:03:33,150 --> 00:03:39,460
They might feel relief that they finally understand how they're wired.
37
00:03:39,940 --> 00:03:40,330
Um,
38
00:03:40,330 --> 00:03:51,550
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.
39
00:03:52,140 --> 00:03:55,130
Other people may really be in a different spot.
40
00:03:55,130 --> 00:03:59,150
They might be in this spot where they're processing.
41
00:03:59,160 --> 00:03:59,740
Um,
42
00:03:59,750 --> 00:04:01,040
just surprise.
43
00:04:01,040 --> 00:04:05,950
Like they were not expecting it, processing maybe grief or fear.
44
00:04:05,960 --> 00:04:06,730
Um,
45
00:04:06,740 --> 00:04:24,830
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,
46
00:04:24,840 --> 00:04:25,670
um,
47
00:04:25,680 --> 00:04:27,930
anyone who um,
48
00:04:27,940 --> 00:04:37,810
has diversity in their neurology ... and many times that passion comes with a lot of emotional charge as well.
49
00:04:38,080 --> 00:04:55,940
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.
50
00:04:55,950 --> 00:05:09,050
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.
51
00:05:11,240 --> 00:05:22,150
What can happen is that the presence of this emotion can shut down the discussion before it's really launched.
52
00:05:22,540 --> 00:05:31,980
So we have something come up and it's responded to with strong emotion and it's very common,
53
00:05:31,980 --> 00:05:39,190
I think for that strong emotion to overtake the topic itself and then people in the room realize,
54
00:05:39,200 --> 00:05:40,000
oh,
55
00:05:40,010 --> 00:05:40,570
okay,
56
00:05:40,570 --> 00:05:42,960
this is not okay to talk about.
57
00:05:42,970 --> 00:05:45,830
This was a really strong,
58
00:05:45,840 --> 00:05:47,050
passionate,
59
00:05:47,580 --> 00:05:54,850
intense reaction and I feel like I'm getting the emotional message that this is not okay.
60
00:05:56,140 --> 00:05:56,830
In fact,
61
00:05:56,840 --> 00:05:58,530
I think to myself,
62
00:05:58,540 --> 00:06:06,830
if I wanted to make sure that it was not okay to talk about some particular topic and that everyone around me knew it,
63
00:06:06,840 --> 00:06:13,160
I probably would be very quick to have emotional responses.
64
00:06:13,170 --> 00:06:20,350
I'd probably be ready with criticism or judgment or correction or logical arguments.
65
00:06:20,740 --> 00:06:21,440
Um,
66
00:06:21,450 --> 00:06:27,850
maybe even just joking at someone's expense or whatever I could do to make
67
00:06:28,740 --> 00:06:35,360
the discussion so intense that people realize that needs to be shut down.
68
00:06:35,740 --> 00:06:43,170
So when I am approaching this topic of how do we say autism is okay to talk about?
69
00:06:43,170 --> 00:06:44,830
Let's bring it to the table.
70
00:06:44,830 --> 00:06:46,160
It's always okay.
71
00:06:46,160 --> 00:06:48,100
How do we create that atmosphere?
72
00:06:48,110 --> 00:06:54,350
I think one of the things we focus on is protecting the emotional atmosphere.
73
00:06:54,840 --> 00:06:55,610
Um,
74
00:06:55,620 --> 00:07:10,600
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.
75
00:07:10,670 --> 00:07:14,860
It may detract from people's ability to process the topic itself.
76
00:07:15,240 --> 00:07:21,230
And so I'm just really conscious of trying to attend to that.
77
00:07:21,240 --> 00:07:24,060
Whenever I speak with someone about the topic,
78
00:07:28,340 --> 00:07:31,780
there's a lot of emotion about what to call things.
79
00:07:31,790 --> 00:07:34,310
So what language are we using?
80
00:07:34,320 --> 00:07:46,700
Some people really strongly want the language of "the autistic individual" or "the autistic" because they really self identify with that neurology.
81
00:07:46,700 --> 00:07:47,620
It's who they are.
82
00:07:47,620 --> 00:07:49,000
It's how they're knit together.
83
00:07:49,340 --> 00:07:51,650
They welcome that identification.
84
00:07:52,040 --> 00:07:57,090
Other people do not want to be known as an autistic individual.
85
00:07:57,090 --> 00:08:07,660
They feel more comfortable saying they are an individual on the spectrum or they have autism, and other people have strong emotions against that.
86
00:08:07,940 --> 00:08:18,120
So we even have this really emotional response to what words are okay to use and that can really um,
87
00:08:18,130 --> 00:08:20,360
come into the discussion as well.
88
00:08:21,740 --> 00:08:29,510
People may have very charged reactions about the,
89
00:08:29,790 --> 00:08:33,420
the peaks and valleys of anyone's journey and by that,
90
00:08:33,420 --> 00:08:37,460
I mean that in our culture,
91
00:08:37,470 --> 00:08:51,060
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.
92
00:08:51,440 --> 00:08:52,550
Um,
93
00:08:52,940 --> 00:08:54,130
in our culture,
94
00:08:54,130 --> 00:09:07,990
we're very focused on fixing these struggles and sometimes that in itself can shut down discussions about complex things,
95
00:09:07,990 --> 00:09:10,660
about things that are not easily fixed.
96
00:09:12,540 --> 00:09:21,670
People on a journey probably get a lot of advice before they get to this journey of assessment for autism.
97
00:09:21,740 --> 00:09:24,560
They've probably gotten a lot of advice like,
98
00:09:25,040 --> 00:09:25,370
uh,
99
00:09:25,380 --> 00:09:30,900
"that wouldn't happen in my house" or "this is how we did it and it fixed it completely,"
100
00:09:30,910 --> 00:09:32,540
or um,
101
00:09:32,550 --> 00:09:38,510
"these are the seven steps to being free from anxiety and if you do these,
102
00:09:38,520 --> 00:09:40,660
then you shouldn't have a problem."
103
00:09:43,040 --> 00:09:43,400
Um,
104
00:09:43,410 --> 00:09:45,270
in my own personal journey,
105
00:09:45,270 --> 00:09:47,540
I really experienced that a lot.
106
00:09:47,550 --> 00:09:48,300
Um,
107
00:09:48,310 --> 00:09:51,940
as a parent, and I know this podcast is about adults,
108
00:09:51,940 --> 00:09:56,750
but the topic of emotional processing um,
109
00:09:56,760 --> 00:10:00,460
is just a very human topic across the lifespan.
110
00:10:01,140 --> 00:10:01,500
Now,
111
00:10:01,500 --> 00:10:05,210
one of the things that my son on the spectrum struggled with,
112
00:10:05,220 --> 00:10:05,750
um,
113
00:10:05,760 --> 00:10:09,090
so much was sleep and also as an infant,
114
00:10:09,090 --> 00:10:12,310
he was just very colicky and upset.
115
00:10:12,310 --> 00:10:12,500
He,
116
00:10:12,500 --> 00:10:14,960
he had a difficulty calming.
117
00:10:15,340 --> 00:10:16,110
Um,
118
00:10:16,120 --> 00:10:18,550
and a lot of things went into that,
119
00:10:18,550 --> 00:10:20,050
but um,
120
00:10:20,050 --> 00:10:23,880
we were really struggling with a sleep issue.
121
00:10:23,880 --> 00:10:30,260
And in fact he didn't End up sleeping through the night on a consistent basis until he was eight years old.
122
00:10:30,740 --> 00:10:34,020
And that was really difficult on him.
123
00:10:34,030 --> 00:10:48,410
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.
124
00:10:48,410 --> 00:10:50,550
So I remember um,
125
00:10:50,560 --> 00:10:52,260
getting this,
126
00:10:52,270 --> 00:11:07,050
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,
127
00:11:07,060 --> 00:11:10,360
they call it class in her class for um,
128
00:11:10,370 --> 00:11:13,020
from the beginning of when we started going,
129
00:11:13,530 --> 00:11:21,880
she left me a note and it said "his crying is disruptive to the class.
130
00:11:22,440 --> 00:11:25,050
Please have him better by tomorrow."
131
00:11:26,030 --> 00:11:31,570
And that is kind of an example of this,
132
00:11:33,740 --> 00:11:46,730
this mindset that things can be fixed if only you're good enough parent or if only you're committed enough to be um,
133
00:11:46,740 --> 00:11:52,960
a calm person or if only you're committed enough to be a good spouse,
134
00:11:53,040 --> 00:11:53,410
you know,
135
00:11:53,410 --> 00:11:54,750
whatever that looks like.
136
00:11:55,590 --> 00:12:00,270
And not only was I a struggling mom,
137
00:12:00,290 --> 00:12:05,210
but now I had been told that I should have this fixed.
138
00:12:05,220 --> 00:12:08,260
I should be able to fix it.
139
00:12:09,010 --> 00:12:14,770
And also another example when he was
140
00:12:14,780 --> 00:12:16,200
a couple of years old,
141
00:12:16,200 --> 00:12:17,470
two or three years old.
142
00:12:17,480 --> 00:12:22,840
I was looking into Melatonin to assist with sleep.
143
00:12:22,850 --> 00:12:49,260
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.
144
00:12:49,640 --> 00:12:52,450
So it was long... long,
145
00:12:52,450 --> 00:12:54,130
that's the gist of it though.
146
00:12:54,140 --> 00:12:55,850
Um and so,
147
00:12:55,860 --> 00:12:56,420
you know,
148
00:12:56,420 --> 00:13:05,290
these messages that are so emotionally intense and not only does it bring about this shame and blame and hopelessness,
149
00:13:05,300 --> 00:13:09,780
but it also creates this atmosphere where it's clear
150
00:13:09,780 --> 00:13:12,310
it is not okay to say that you're struggling.
151
00:13:12,640 --> 00:13:24,460
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,
152
00:13:24,460 --> 00:13:34,460
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.
153
00:13:34,940 --> 00:13:39,680
So these emotional um... these emotional charges,
154
00:13:39,690 --> 00:13:48,370
I think really dampen our ability to give people the freedom to talk about all the ups and downs of their life,
155
00:13:48,370 --> 00:13:53,590
like life is messy and good and hard and you know,
156
00:13:53,590 --> 00:14:00,860
I feel like I can bring up any topic um and realize that it's okay to share that.
157
00:14:01,340 --> 00:14:02,320
Instead.
158
00:14:02,320 --> 00:14:10,550
I think we have a lot of emotional overtones to what's okay to bring up and what's okay to talk about.
159
00:14:12,640 --> 00:14:19,860
I remember um being struck too uh when my son was about a year old,
160
00:14:20,440 --> 00:14:23,870
one of my colleagues had an infant,
161
00:14:23,870 --> 00:14:25,170
this was her first child,
162
00:14:25,180 --> 00:14:29,840
and after I think five days after she was born,
163
00:14:29,850 --> 00:14:39,100
um my colleague brought her in and she was just this bundle of pink, cute as can be, slept the whole time.
164
00:14:39,600 --> 00:14:41,610
And you know,
165
00:14:41,610 --> 00:14:45,860
that was so different than what was happening in my home.
166
00:14:46,340 --> 00:14:47,890
And she said,
167
00:14:47,890 --> 00:14:48,360
gosh,
168
00:14:48,360 --> 00:14:52,560
I'm really a little um nervous and watchful,
169
00:14:52,560 --> 00:14:56,110
because I have to wake her up in the middle of the night for her to eat.
170
00:14:56,120 --> 00:14:56,660
You know,
171
00:14:56,660 --> 00:15:00,210
she's already sleeping through and I'm a little nervous about,
172
00:15:00,220 --> 00:15:00,550
you know,
173
00:15:00,550 --> 00:15:02,780
her nutrition, and, of course,
174
00:15:02,790 --> 00:15:06,760
here I am not sleeping for a year.
175
00:15:07,240 --> 00:15:11,010
And another colleague said to her,
176
00:15:11,250 --> 00:15:11,690
"oh,
177
00:15:11,690 --> 00:15:13,810
what a good baby you have."
178
00:15:14,440 --> 00:15:21,250
And usually I'm very measured in my speech and I think about what I say ahead of time,
179
00:15:21,250 --> 00:15:33,860
but I felt this surge going from my toes up to my ... my voice and I blurted out, "all babies are good."
180
00:15:35,140 --> 00:15:36,560
And she said,
181
00:15:36,560 --> 00:15:37,340
"well,
182
00:15:37,360 --> 00:15:37,950
yeah,
183
00:15:37,950 --> 00:15:39,360
but you know what I mean?"
184
00:15:39,840 --> 00:15:48,370
And I realized that we attach goodness to a baby,
185
00:15:48,370 --> 00:15:49,860
that's easy.
186
00:15:50,590 --> 00:15:51,130
I said,
187
00:15:51,130 --> 00:15:51,520
"you mean,
188
00:15:51,520 --> 00:15:53,950
she's easy and that's good."
189
00:15:55,040 --> 00:15:57,020
But all babies are good.
190
00:15:57,030 --> 00:16:08,250
So I think we have to watch our emotional tone so that we make sure everyone knows that every infant has value.
191
00:16:08,260 --> 00:16:11,660
Every individual is important.
192
00:16:12,120 --> 00:16:13,060
There aren't,
193
00:16:13,070 --> 00:16:13,960
you know,
194
00:16:14,640 --> 00:16:16,990
good babies and bad babies.
195
00:16:17,440 --> 00:16:26,460
There are struggling babies and babies that are not struggling and so forth across the whole lifespan,
196
00:16:26,840 --> 00:16:35,150
that our emotional charge can sometimes make people feel less than good, less than valued.
197
00:16:36,060 --> 00:17:00,150
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.
198
00:17:01,840 --> 00:17:12,020
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,
199
00:17:12,020 --> 00:17:13,920
whether they're celebrating this,
200
00:17:13,930 --> 00:17:15,600
whether they're relieved,
201
00:17:15,600 --> 00:17:16,960
whether they're struggling,
202
00:17:17,540 --> 00:17:23,120
whether they're upset about the diagnosis or the concept,
203
00:17:23,130 --> 00:17:25,450
I want to give people space,
204
00:17:25,630 --> 00:17:35,460
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.
205
00:17:36,840 --> 00:17:38,220
On the other hand,
206
00:17:38,230 --> 00:17:48,060
I really want to balance that freedom to feel with my own awareness of protecting the emotional atmosphere.
207
00:17:49,140 --> 00:18:09,170
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.
208
00:18:10,240 --> 00:18:15,780
Um I just feel like that is so easy.
209
00:18:16,940 --> 00:18:29,670
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.
210
00:18:30,140 --> 00:18:36,760
Um and I would also say emotions like hopelessness,
211
00:18:36,760 --> 00:18:37,620
helplessness,
212
00:18:37,620 --> 00:18:42,780
worthlessness, and it's okay for people to feel fear...
213
00:18:42,780 --> 00:18:48,380
But I do try to protect from that just global fear that doesn't leave,
214
00:18:48,390 --> 00:18:48,680
you know,
215
00:18:48,680 --> 00:18:50,360
this is not a season of fear.
216
00:18:50,360 --> 00:18:56,230
This is "I am afraid of a diagnosis in general."
217
00:18:56,640 --> 00:19:01,100
And so I try to have some protection for that.
218
00:19:02,740 --> 00:19:04,010
By protection.
219
00:19:04,020 --> 00:19:07,640
I mean that I try to really monitor my own language.
220
00:19:07,650 --> 00:19:10,300
I try to acknowledge what people are saying,
221
00:19:10,300 --> 00:19:11,770
but I do point out,
222
00:19:12,340 --> 00:19:13,110
um,
223
00:19:13,120 --> 00:19:18,270
when I feel like an emotion is really just working against their wellness,
224
00:19:18,640 --> 00:19:19,080
you know,
225
00:19:19,080 --> 00:19:23,950
it sounds like this is about shame and there is no criticism here.
226
00:19:24,440 --> 00:19:26,460
This is not a criticism.
227
00:19:26,920 --> 00:19:38,230
This is to increase your power to understand yourself to be able to get centered when you're just feeling off center.
228
00:19:39,010 --> 00:19:40,860
This is not a criticism.
229
00:19:41,740 --> 00:19:46,170
So I may say things like that to protect the atmosphere.
230
00:19:51,740 --> 00:20:00,630
I also try to explain to people if they are in a point of struggle about the topic,
231
00:20:00,640 --> 00:20:02,360
let's say I've brought it up.
232
00:20:03,440 --> 00:20:05,360
They're struggling with the topic.
233
00:20:06,950 --> 00:20:22,850
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.
234
00:20:23,440 --> 00:20:23,770
Uh,
235
00:20:23,780 --> 00:20:33,270
it was an early intervention preschool and he had started showing at the age of three some additional um,
236
00:20:35,340 --> 00:20:37,860
characteristics that,
237
00:20:38,360 --> 00:20:38,660
you know,
238
00:20:38,660 --> 00:20:45,520
we later realized were part of the autism and I in a parent teacher meeting.
239
00:20:45,520 --> 00:20:48,360
There were two teachers in me and I said,
240
00:20:48,360 --> 00:20:51,470
have you started seeing these kinds of things for him?
241
00:20:51,470 --> 00:20:52,860
Because we're seeing that a lot.
242
00:20:53,330 --> 00:20:58,020
And I remember vividly that they both looked at each other,
243
00:20:58,020 --> 00:21:03,700
both teachers and didn't say anything and then looked at me and said,
244
00:21:03,700 --> 00:21:07,050
well we'll just start to work on that... they hadn't seen it.
245
00:21:07,940 --> 00:21:27,030
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,
246
00:21:27,040 --> 00:21:27,530
oh,
247
00:21:27,800 --> 00:21:29,810
if this is not okay to talk about,
248
00:21:29,810 --> 00:21:31,350
do I really want to know?
249
00:21:31,840 --> 00:21:33,180
But to be honest,
250
00:21:33,190 --> 00:21:36,850
I needed to know I needed that information.
251
00:21:37,240 --> 00:21:46,050
It didn't help me to be in the dark for two more years about what we could have been really understanding better.
252
00:21:46,940 --> 00:21:51,350
Um So when I'm talking to someone in that position,
253
00:21:52,730 --> 00:21:54,560
I may say something like,
254
00:21:54,940 --> 00:21:55,680
you know,
255
00:21:55,680 --> 00:22:06,460
it's because your well being is so important that I will always bring up topics that impact your well being,
256
00:22:06,460 --> 00:22:20,270
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.
257
00:22:21,540 --> 00:22:30,390
Um So I also try to bring it to the table when it's about to be shut down again,
258
00:22:30,390 --> 00:22:34,360
tying it to their their well being,
259
00:22:34,360 --> 00:22:36,780
their worth and my value for them.
260
00:22:38,350 --> 00:22:41,730
I've also I started to think,
261
00:22:43,340 --> 00:22:44,110
you know,
262
00:22:44,120 --> 00:22:52,020
what do I want people to leave a conversation with me with?
263
00:22:52,020 --> 00:22:53,640
What do I want him to leave with?
264
00:22:53,700 --> 00:22:54,040
Well,
265
00:22:54,050 --> 00:22:57,080
I'd like them of course to leave with some information.
266
00:22:57,080 --> 00:23:09,860
But even more so I realize that what is most impactful is I want them to leave knowing that they are valued.
267
00:23:10,440 --> 00:23:12,990
I want them to leave without fear.
268
00:23:13,540 --> 00:23:18,360
I want them to feel empowered and courageous and supported.
269
00:23:19,540 --> 00:23:24,670
So when I am interacting with them about the topic,
270
00:23:25,240 --> 00:23:28,770
am I providing data and information of course,
271
00:23:30,040 --> 00:23:54,770
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,
272
00:23:55,940 --> 00:24:03,450
I feel like I was seen because that's really important.
273
00:24:05,540 --> 00:24:09,610
I want to share a personal experience,
274
00:24:10,160 --> 00:24:15,950
just two to round out this episode.
275
00:24:17,040 --> 00:24:19,050
And um,
276
00:24:21,540 --> 00:24:35,850
I got to the point where I did want to process this with my son's pediatrician When he was about four.
277
00:24:36,340 --> 00:24:44,050
And I came to that on my own by research and watching him.
278
00:24:44,050 --> 00:24:47,680
And um I decided,
279
00:24:47,830 --> 00:24:48,290
you know,
280
00:24:48,290 --> 00:24:50,250
it's time to talk about this.
281
00:24:50,570 --> 00:25:11,550
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.
282
00:25:11,560 --> 00:25:19,450
He was our third pediatrician to be honest and I just did not know him that well.
283
00:25:20,330 --> 00:25:30,670
And because I knew it might be a topic that might get shut down or there might be an emotional charge.
284
00:25:32,340 --> 00:25:35,220
I practiced what I was going to say ahead of time.
285
00:25:35,230 --> 00:25:36,780
Like a lot.
286
00:25:36,790 --> 00:25:39,510
You know how you feel like I'm going in.
287
00:25:39,520 --> 00:25:41,550
I have this one appointment.
288
00:25:41,560 --> 00:25:43,110
I don't know this person,
289
00:25:43,120 --> 00:25:47,760
but I need to make sure I'm thinking clearly enough to get these things across.
290
00:25:48,640 --> 00:25:54,580
So I practiced and I wrote things down and the appointment got rescheduled three times.
291
00:25:54,590 --> 00:25:57,360
So it's one of those things and you're waiting.
292
00:25:57,740 --> 00:26:02,610
And I went to the appointment.
293
00:26:02,610 --> 00:26:04,760
So I was kind of armed with,
294
00:26:05,540 --> 00:26:08,580
you know what I wanted to say?
295
00:26:08,580 --> 00:26:13,340
But I was very watchful about how this would go.
296
00:26:14,120 --> 00:26:24,600
And I also had received so much advice for so long without really getting assistance.
297
00:26:24,610 --> 00:26:28,540
And I didn't want that to be the case either.
298
00:26:28,790 --> 00:26:32,460
I really wanted to talk.
299
00:26:32,470 --> 00:26:41,860
I wanted someone to talk with me about a difficult thing and a complex thing and I wanted um something substantive to do next.
300
00:26:43,040 --> 00:26:46,370
So we discussed a lot of things.
301
00:26:46,380 --> 00:26:52,850
Um He referred us to the autism diagnostic clinic at our local easter seals.
302
00:26:53,340 --> 00:26:55,990
Uh and then that wait list started of course.
303
00:26:56,540 --> 00:26:59,520
Um So did he give me information?
304
00:26:59,520 --> 00:27:00,310
Yes.
305
00:27:00,320 --> 00:27:01,960
Did he give me a plan?
306
00:27:01,960 --> 00:27:02,940
Absolutely.
307
00:27:02,950 --> 00:27:05,960
But when I left that office,
308
00:27:06,640 --> 00:27:11,210
what was life changing for me ... was mostly something else.
309
00:27:12,440 --> 00:27:20,800
And what it was was that at the end of our talk... and I still get emotional about this.
310
00:27:20,850 --> 00:27:22,390
At the end of our talk,
311
00:27:22,390 --> 00:27:24,110
he looked at me and he said,
312
00:27:24,110 --> 00:27:24,590
"I hope,
313
00:27:24,590 --> 00:27:33,710
you know you're a good mom"... and I had practiced what to say in this session.
314
00:27:33,710 --> 00:27:35,160
But I,
315
00:27:35,300 --> 00:27:36,600
my mouth hung open.
316
00:27:36,600 --> 00:27:57,550
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,
317
00:27:57,550 --> 00:27:58,800
do you think I'm a good mom?
318
00:27:58,800 --> 00:27:59,320
They would say,
319
00:27:59,320 --> 00:28:01,300
well of course you are.
320
00:28:01,330 --> 00:28:02,860
That goes without saying.
321
00:28:04,440 --> 00:28:06,350
But I realized it doesn't,
322
00:28:06,590 --> 00:28:19,200
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.
323
00:28:21,540 --> 00:28:23,550
Nobody had ever said,
324
00:28:24,740 --> 00:28:25,190
I hope,
325
00:28:25,190 --> 00:28:25,450
you know,
326
00:28:25,450 --> 00:28:36,770
you're a good mom that has never left me.
327
00:28:37,240 --> 00:28:43,700
It took no skill to say he didn't have to be an autism expert and he was not.
328
00:28:44,840 --> 00:28:54,790
But when I left the emotional atmosphere had been protected and I left feeling seen and heard and valued.
329
00:28:55,840 --> 00:29:07,160
And that gave me the courage to keep going to talk about something that is complex and emotionally charged.
330
00:29:07,840 --> 00:29:26,480
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.
331
00:29:26,480 --> 00:29:27,560
We see them.
332
00:29:28,640 --> 00:29:29,660
We honor them.
333
00:29:29,660 --> 00:29:31,060
We respect them.
334
00:29:32,440 --> 00:29:32,970
Um,
335
00:29:32,980 --> 00:29:35,600
and that's something we think goes without saying,
336
00:29:35,600 --> 00:29:36,890
but it really doesn't.
337
00:29:36,900 --> 00:29:45,910
And so that's what I mean by navigating emotional atmospheres and protecting emotional atmospheres.
338
00:29:46,600 --> 00:30:00,420
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,
339
00:30:00,420 --> 00:30:05,270
I see you and you're important and I'm glad you're here.
340
00:30:05,460 --> 00:30:06,560
And let's talk about it.
341
00:30:10,240 --> 00:30:15,330
I hope you'll join me next time for our final episode in the series,
342
00:30:15,340 --> 00:30:22,510
which is about talking about autism to others when you see autistic characteristics in them.
343
00:30:22,510 --> 00:30:25,240
But but they're not expecting this discussion.
344
00:30:25,240 --> 00:30:25,860
This is,
345
00:30:26,040 --> 00:30:26,380
you know,
346
00:30:26,380 --> 00:30:27,720
something you want to bring up.
347
00:30:27,730 --> 00:30:30,660
But should I bring it up and how could I bring it up?
348
00:30:30,940 --> 00:30:40,860
Um That will be our next discussion and I will see you then.
67 episod
Semua episode
×Selamat datang ke Player FM
Player FM mengimbas laman-laman web bagi podcast berkualiti tinggi untuk anda nikmati sekarang. Ia merupakan aplikasi podcast terbaik dan berfungsi untuk Android, iPhone, dan web. Daftar untuk melaraskan langganan merentasi peranti.