Who is Dr. Mona Delahooke?

Dr. Mona Delahooke is a clinical child psychologist focused on supporting families and children with developmental and emotional differences.

What is the main topic of Dr. Delahooke’s presentation?

The presentation focuses on redefining support for children with autism by understanding behaviors through a compassionate lens, considering them as signals of sensory processing differences rather than issues to fix.

What is the book 'Beyond Behaviors' about?

'Beyond Behaviors' explores using neuroscience and compassion to understand and address children's behavioral challenges, emphasizing a developmental approach.

What does Dr. Delahooke think about traditional behavioral approaches in autism?

Dr. Delahooke critiques traditional behavioral methods such as compliance-based techniques, arguing for understanding behaviors as adaptive responses rather than problems to be fixed.

What is the 'Developmental Iceberg'?

The 'Developmental Iceberg' is a metaphor used to describe visible behaviors as just the tip, with the underlying causes hidden beneath, requiring a deeper understanding of individual sensory and physiological differences.

How can misunderstandings affect autistic individuals?

Misunderstandings and focusing solely on behaviors can harm emotional well-being, emphasizing the need for compassionate understanding of each individual’s internal sensory experiences.

Why is safety important in Dr. Delahooke's approach?

Feeling safe is foundational for development and learning. The approach emphasizes creating a sense of safety in children through compassionate relationships rather than focusing on surface behaviors.

What are 'top-down' and 'bottom-up' behaviors?

'Top-down' behaviors are planned and deliberate, while 'bottom-up' behaviors are instinctual reactions to sensory input, often misunderstood as 'misbehavior' in children with autism.

What should be the focus instead of behavior change?

The focus should be on creating safe, supportive environments and relationships, understanding underlying sensory processing needs, and respecting natural behaviors rather than forcing compliance.

Is there ongoing research supporting Dr. Delahooke's views?

Yes, there is ongoing research that supports developmental approaches over traditional behavioral methods, emphasizing understanding and accommodating individual sensory needs.

Importance of Respecting Individual Differences in the Context of Relationships- Dr. Mona Delahooke

01:27:00

https://www.youtube.com/watch?v=7iJvwk-jjCc

Summary

TLDRDr. Mona Delahooke, a clinical child psychologist, shares insights on supporting children with autism by focusing on individual differences and behaviors as adaptive signals of sensory processing rather than issues to correct. Through her book "Beyond Behaviors," she emphasizes a compassionate, neuroscience-informed approach, contrasting with traditional compliance-based methods. Delahooke advocates understanding children's behaviors as crucial to their psychological state and stresses creating a safe environment to foster development. She critiques conventional behavior-focused treatments for autism, promoting the adoption of a developmental lens that honors each child's unique sensory needs and emotional regulation challenges. The discussion also highlights the importance of listening to autistic individuals and incorporating their experiences into educational practices to ensure compassionate and supportive interventions.

Takeaways

📘 Understanding behaviors in autism requires a compassionate, non-compliance-focused approach.
🌊 The 'Developmental Iceberg' metaphor shows behaviors as signals with hidden causes.
🔍 Focus on understanding sensory processing needs rather than surface behaviors.
💬 Engage autistic individuals' perspectives for insights into their experiences.
🤝 Safe and supportive relationships are vital for child development.
🔄 Misunderstandings can harm autistic individuals' emotional well-being.
🧠 Neuroscience and the Polyvagal Theory inform compassionate autism support strategies.
👂 Behavioral signals are adaptive, not just problems to fix.
👐 Developmental approaches emphasize respecting each child's unique experiences.
📚 Dr. Delahooke's book "Beyond Behaviors" is a resource for new perspectives in child psychology.

Timeline

00:00:00 - 00:05:00
The video begins with music playing.
00:05:00 - 00:10:00
The music continues to play without interruption.
00:10:00 - 00:15:00
The music plays once more with a subtle change in tone.
00:15:00 - 00:20:00
Jenn Shonger introduces herself as a representative of the New Jersey Autism Center, highlighting the involvement of Dr. Mona Della Hook in today's discussion. Dr. Hook is a clinical child psychologist with extensive experience, and the discussion will focus on respectful behavior management in autism.
00:20:00 - 00:25:00
Discussion about how human behaviors are influenced by physiological states begins, emphasizing the connection between the brain and the body, especially concerning individuals on the autism spectrum. Dr. Della Hook discusses her professional background and approach to developmental differences.
00:25:00 - 00:30:00
The video delves into understanding children's behaviors beyond surface-level observations, explaining the 'developmental iceberg' and emphasizing the importance of looking at underlying causes for behaviors.
00:30:00 - 00:35:00
Dr. Della Hook argues for shifting the focus from changing behaviors to understanding individual differences in sensory processing and emotional regulation, particularly for children with autism.
00:35:00 - 00:40:00
The concept of stress responses is introduced, differentiating between top-down (intentional) and bottom-up (instinctual) behaviors. Strategies for understanding and addressing bottom-up behaviors are discussed, focusing on what they reveal about the child's internal state.
00:40:00 - 00:45:00
A case study highlights the importance of recognizing when compliance demands escalate stress responses, illustrating through an example with Max. The importance of establishing a sense of safety in therapeutic settings is stressed.
00:45:00 - 00:50:00
Discussion on the outdated behavior-focus model by educators and healthcare providers, advocating for seeing behaviors as responses to sensory experiences rather than mere outcomes needing correction.
00:50:00 - 00:55:00
Further exploration of behaviors and their meanings, proposing questions to guide understanding like constitutional needs behind behaviors, shifting away from labeling behaviors as compliant/non-compliant.
00:55:00 - 01:00:00
The necessity for enhancing communication methods for non-verbal autistic children is emphasized. The importance of having a consistent support team that respects and understands the child's communication style is highlighted.
01:00:00 - 01:05:00
Different options for understanding autism are presented, focusing on resources that prioritize the whole child over behavior modification. Advocacy for systems and professionals to evolve their perception of autism is discussed.
01:05:00 - 01:10:00
Discussion on neurodiversity: Autism should be respected as part of human diversity. The emphasis is on altering educational and healthcare perceptions to reduce anxiety among autistic individuals.
01:10:00 - 01:15:00
Discussion around maintaining calm, consistent environments to support autistic children during distress. The importance of extending the window of tolerance through positive, supportive relationships is highlighted.
01:15:00 - 01:20:00
Parents and teachers are encouraged to embrace their roles as co-regulators for children, maintaining a supportive atmosphere and focusing on relationship building as a foundational approach to behavior.
01:20:00 - 01:27:00
The dialogue concludes with a Q&A session addressing barriers to adopting developmental approaches, the importance of autistic self-advocacy, and understanding and supporting children's natural behaviors. The session closes on a hopeful note about changing paradigms to support autistic children.

Mind Map

Video Q&A

Who is Dr. Mona Delahooke?
Dr. Mona Delahooke is a clinical child psychologist focused on supporting families and children with developmental and emotional differences.
What is the main topic of Dr. Delahooke’s presentation?
The presentation focuses on redefining support for children with autism by understanding behaviors through a compassionate lens, considering them as signals of sensory processing differences rather than issues to fix.
What is the book 'Beyond Behaviors' about?
'Beyond Behaviors' explores using neuroscience and compassion to understand and address children's behavioral challenges, emphasizing a developmental approach.
What does Dr. Delahooke think about traditional behavioral approaches in autism?
Dr. Delahooke critiques traditional behavioral methods such as compliance-based techniques, arguing for understanding behaviors as adaptive responses rather than problems to be fixed.
What is the 'Developmental Iceberg'?
The 'Developmental Iceberg' is a metaphor used to describe visible behaviors as just the tip, with the underlying causes hidden beneath, requiring a deeper understanding of individual sensory and physiological differences.
How can misunderstandings affect autistic individuals?
Misunderstandings and focusing solely on behaviors can harm emotional well-being, emphasizing the need for compassionate understanding of each individual’s internal sensory experiences.
Why is safety important in Dr. Delahooke's approach?
Feeling safe is foundational for development and learning. The approach emphasizes creating a sense of safety in children through compassionate relationships rather than focusing on surface behaviors.
What are 'top-down' and 'bottom-up' behaviors?
'Top-down' behaviors are planned and deliberate, while 'bottom-up' behaviors are instinctual reactions to sensory input, often misunderstood as 'misbehavior' in children with autism.
What should be the focus instead of behavior change?
The focus should be on creating safe, supportive environments and relationships, understanding underlying sensory processing needs, and respecting natural behaviors rather than forcing compliance.
Is there ongoing research supporting Dr. Delahooke's views?
Yes, there is ongoing research that supports developmental approaches over traditional behavioral methods, emphasizing understanding and accommodating individual sensory needs.

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do
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all right i think we are live um welcome
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everyone
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i'm so happy to be here today i'm jenn
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shonger from the new jersey autism
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center of excellence which is funded in
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part by the new jersey governor's
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council for the medical research and
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treatments in autism
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and the new jersey department of health
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i am here today with one of my
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favorite humans dr mona della hook who's
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a clinical child psychologist with a
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passion for supporting families and
00:15:32
children
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she's worked widely with
00:15:35
multi-disciplinary teams in the area of
00:15:37
developmental and emotional differences
00:15:39
for over 30 years
00:15:40
she's a senior faculty member of the
00:15:42
perfectum foundation and is the trainer
00:15:44
and consultant to schools
00:15:46
public and private agencies and parents
00:15:49
her blog
00:15:50
and new book beyond behaviors which i
00:15:52
can't say enough good things about
00:15:54
uh explores how we can use neuroscience
00:15:56
and compassion to better understand and
00:15:58
solve
00:15:59
children's behavioral challenges um in
00:16:02
today's talk dr delahook will discuss
00:16:04
the differences we observe in autism
00:16:06
we'll introduce a paradigm that helps us
00:16:08
respect behaviors as signals coming from
00:16:10
sensory processing differences
00:16:12
and to respect behaviors for what they
00:16:14
tell us about each individual
00:16:16
and the supports they need this approach
00:16:18
to autism support stands in contrast to
00:16:21
approaches that involve cajoling
00:16:22
reinforcing
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and non-reinforcing of surface behaviors
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um
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speaking of dr delahook's new book
00:16:29
beyond behaviors
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which i have right here
00:16:38
um she was generous enough to donate
00:16:41
some books to us that we'll be able to
00:16:42
give away after the presentation airs
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and we're so
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thankful to you for that um
00:16:49
i just wanted to mention a few brief
00:16:50
housekeeping notes um
00:16:52
if anyone would like to ask a question
00:16:54
which we highly encourage we hope
00:16:56
uh you will um you just have to be
00:16:58
logged into
00:17:00
the your youtube account in order to
00:17:01
post in the chat
00:17:03
uh we'll monitor the chat throughout and
00:17:06
we'll have time
00:17:06
um at the end for q a um
00:17:10
and this session will be available to
00:17:11
watch at any time
00:17:13
you don't have to be logged in to watch
00:17:15
um it will
00:17:16
stay on our youtube page and um dr del
00:17:19
hook
00:17:20
will likely share it as well um
00:17:24
dr della hook thank you so much for
00:17:26
being here today
00:17:27
i'm so excited um so i'm gonna go
00:17:32
off camera now and um i'll be back on
00:17:36
for us to chat after right i will share
00:17:39
my screen thank you so much for such a
00:17:41
beautiful
00:17:42
welcome um jen i'm really happy to be
00:17:46
here
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thank you so much to you talking to
00:17:49
everybody today
00:17:52
so here we go
00:17:56
um it's just a pleasure to be
00:18:00
here and to talk to you about one of my
00:18:03
favorite topics and that's supporting
00:18:05
children
00:18:06
um with neuro divergent
00:18:10
minds and brains and all of our children
00:18:14
who have challenges and particularly um
00:18:17
with behavioral challenges so it's
00:18:20
really a joy
00:18:21
to um to be here now i am just
00:18:27
two on my there we go
00:18:31
um what we are going to be talking about
00:18:34
is
00:18:34
how we can learn
00:18:38
to redefine our support for children
00:18:42
and particularly children who struggle
00:18:45
with behavioral challenges but also
00:18:47
developmental differences delays and
00:18:50
children who don't
00:18:51
fit into what we might typically think
00:18:55
of uh in terms of how we want them to
00:18:59
act and um how we
00:19:02
uh in our expectations in general
00:19:05
so one way to think about what we see
00:19:09
in children's behaviors is what i call
00:19:11
it a developmental iceberg
00:19:13
and in an iceberg as you know in an
00:19:16
iceberg
00:19:17
the tip of the iceberg is only about 10
00:19:20
of that big chunk of ice and it's those
00:19:23
behaviors that we
00:19:24
see so we will see
00:19:27
um a child doing something but
00:19:30
the triggers the causes the
00:19:34
reasons for those behaviors are really
00:19:37
invisible
00:19:38
and that would be that large piece under
00:19:41
the
00:19:42
surface of the water um that would
00:19:44
contain
00:19:45
the reasons and there are millions of
00:19:47
reasons that cause the behaviors that we
00:19:50
see
00:19:50
that cause the things children say that
00:19:53
things
00:19:53
they do the way they move their bodies
00:19:57
and one of the um main drivers
00:20:01
of human behaviors not just child
00:20:03
behaviors but of human behaviors
00:20:06
is our state our physiological state
00:20:10
um what is a physiological state that
00:20:13
basically
00:20:13
is um our brain body connection you know
00:20:17
we have a nervous system we have a
00:20:18
central nervous system
00:20:20
and an autonomic nervous system that
00:20:22
connects
00:20:23
our brain to our body and our body to
00:20:26
our brain so we're
00:20:27
constantly getting feedback from
00:20:30
our body that tells our brain what's
00:20:33
going on
00:20:34
and then our brain kind of integrates
00:20:36
all the information that's
00:20:38
constantly coming in and then produces
00:20:41
an action and that's what we see in our
00:20:44
children
00:20:46
so when we think about um
00:20:50
behaviors and how often behaviors
00:20:53
are the focus of our attention our
00:20:56
treatment
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um our goals particularly for children
00:21:00
diagnosed on the autism
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spectrum it brings up an interesting
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question
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and that is should we really be focusing
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on the behaviors
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or should we be focusing on something
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else
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so my work and um what what i have
00:21:18
been doing in the last several decades
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since i was trained in a
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um a larger mind-body paradigm i
00:21:29
actually was
00:21:30
very fortunate to work with
00:21:33
dr stanley greenspan and dr serena
00:21:36
weeder
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many years ago when they were developing
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a
00:21:40
developmental essentially what turns out
00:21:43
to be a neurodevelopmental approach to
00:21:45
helping children
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um with developmental differences
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including autism
00:21:50
and when we studied
00:21:53
when we learned from across disciplines
00:21:56
we learned from pediatricians
00:21:58
and occupational therapists physical
00:22:01
therapists
00:22:02
nurses educators
00:22:05
vision therapists mental health
00:22:08
professionals
00:22:09
psychiatrists in these really rich
00:22:12
cross-disciplinary teams it
00:22:15
forced essentially a lens shift a
00:22:18
paradigm shift
00:22:20
that for me and for many of my
00:22:23
colleagues
00:22:24
they just realized that it's important
00:22:26
to
00:22:27
not just focus on a child's behavior
00:22:30
because that's really only a signal
00:22:34
and so when we sit when we shift the
00:22:36
lens we can look
00:22:38
at um all these different things that
00:22:41
are what we call individual differences
00:22:44
and
00:22:45
individual differences in each of us and
00:22:47
every single human
00:22:49
is what um drives
00:22:53
our autonomic nervous system to
00:22:56
notice things in the environment and to
00:22:59
create
00:23:00
all of our behaviors but especially
00:23:03
those
00:23:03
behaviors that we might think about as
00:23:05
challenging
00:23:06
as non-preferred and those behaviors
00:23:09
that we want to
00:23:11
um oftentimes target
00:23:14
uh for children to change
00:23:17
so one concept i just wanted to bring up
00:23:20
is the concept that
00:23:22
vulnerability that is sensitivity
00:23:26
to threat in the nervous system
00:23:29
for children on the spectrum and for
00:23:32
many many children
00:23:34
is due to this sense of threat the sense
00:23:38
of not
00:23:38
feeling comfortable in my brain and body
00:23:41
and so
00:23:42
often times what we see therefore is a
00:23:45
behavioral challenge
00:23:47
now currently um oftentimes
00:23:51
like i said we classify behaviors as
00:23:53
compliant or non-compliant
00:23:55
as preferred or non-preferred and this
00:23:59
leads to
00:24:01
a a paradigm of
00:24:04
rewards and consequences uh taking an
00:24:07
action to teach a child about a behavior
00:24:09
and encouraging certain behaviors over
00:24:11
others
00:24:12
so it's kind of a bi bifurcated look at
00:24:16
behaviors as either good or bad
00:24:17
compliant or non-compliant
00:24:20
now this shift that i propose
00:24:23
in beyond behaviors is that we look at
00:24:26
behaviors
00:24:27
as an adaptation to a child's autonomic
00:24:30
nervous system
00:24:32
and basically what does that mean uh it
00:24:34
means that we can view behaviors
00:24:37
especially the ones that are persistent
00:24:39
the ones that are um useful for the
00:24:42
child and come up a lot
00:24:44
as cues as to their
00:24:48
internal world to their invisible needs
00:24:51
those invisible needs that could include
00:24:54
feeling uncomfortable or pain
00:24:55
uh inside the body which is known as the
00:24:58
interoception what we feel
00:25:00
inside of our bodies but sensations
00:25:03
thoughts emotions
00:25:05
and really moving away from compliant or
00:25:08
non-compliant classifications
00:25:11
and especially not to willful
00:25:14
misbehavior
00:25:15
or behaviors that are there to serve a
00:25:17
purpose
00:25:18
um that is considered negative
00:25:23
so in my opinion that's why our current
00:25:25
go-to's are often wrong
00:25:27
sometimes we blame the child we can
00:25:30
blame a diagnosis we can say oh
00:25:33
this behavior is part of the autism
00:25:35
diagnosis but
00:25:37
oftentimes in the school systems where i
00:25:40
where i am observing and working with
00:25:43
with children it's not looked at
00:25:46
as something positive so an autistic
00:25:49
behavior
00:25:50
may be targeted for change um
00:25:54
if it's not if it's considered um
00:25:57
something that is in the category of
00:26:00
being
00:26:01
uh changed graphed out for um
00:26:05
uh the volume the number the frequency
00:26:09
of
00:26:09
of these behaviors sometimes uh
00:26:12
for other reasons children's parents are
00:26:16
accused of not being consistent enough
00:26:18
or having so not doing something enough
00:26:20
in the home
00:26:21
and i feel like there's a um a lot of
00:26:25
blame that goes on
00:26:26
that's inaccurate uh because
00:26:29
we don't value behaviors for what they
00:26:32
tell us
00:26:33
so what happens then we often go to time
00:26:36
outs positive and negative reinforcement
00:26:39
schedules
00:26:41
or we blame a child's will and
00:26:44
we say things like the child is doing
00:26:47
this behavior because they're trying to
00:26:49
get negative attention
00:26:52
and these are the um
00:26:55
these are the concepts that i think are
00:26:58
being replaced
00:27:00
with another understanding and that is
00:27:04
that individuals with differences
00:27:07
and particularly children on the
00:27:09
spectrum with brain wiring differences
00:27:11
can have emotional regulation challenges
00:27:14
meaning
00:27:15
that ability to stay calm in your body
00:27:20
is impacted by
00:27:23
reasons underneath the tip of the
00:27:25
iceberg every single child every single
00:27:28
teenager adult is different in terms of
00:27:30
their
00:27:31
wiring differences but we do know
00:27:35
that there are um there is a tendency
00:27:38
to have over reactivity in some of the
00:27:41
sensory systems
00:27:42
so there are differences in some of the
00:27:45
sensory systems
00:27:46
that create the need for these adaptive
00:27:50
behaviors
00:27:51
and which means that many behaviors and
00:27:54
particularly repetitive behaviors can
00:27:56
serve an important purpose
00:27:58
they are protective they are adaptive
00:28:00
and
00:28:01
if they involve movement we know that
00:28:04
moving whether that's saying something
00:28:06
by moving your mouth
00:28:08
or moving your general body and doing
00:28:10
things
00:28:11
can help humans feel better
00:28:14
so when we are struggling when we're
00:28:16
feeling uncomfortable movement can help
00:28:19
but what happens often time in our
00:28:22
educational settings
00:28:24
is that these various forms of movement
00:28:27
are
00:28:28
judged or viewed negatively or targeted
00:28:31
for
00:28:32
change and so
00:28:35
i would like to offer um a
00:28:38
an idea and that is
00:28:42
one question that we can ask that's
00:28:44
really important
00:28:46
is is this a behavior that is
00:28:50
purposeful that is willful that is
00:28:52
malicious that is
00:28:53
uh done with the child's intent
00:28:56
which would be what we would consider a
00:28:58
top-down behavior
00:29:00
top-down behaviors are planned um they
00:29:03
serve a purpose
00:29:05
and they are um that you have to have a
00:29:08
certain
00:29:08
level of executive function
00:29:11
essentially this ability to plan and to
00:29:15
consider consequences when you have
00:29:17
these top-down behaviors
00:29:20
the second category behaviors that are
00:29:24
not differentiated from top-down
00:29:26
behaviors would be considered
00:29:27
bottom-up or body-up behaviors these
00:29:30
behaviors
00:29:31
are ones we would consider stress
00:29:33
responses or stress reactions
00:29:36
or even stress behaviors as stuart
00:29:39
chanker calls them
00:29:40
and what we want to ask is is this child
00:29:43
experiencing a stress
00:29:45
response is this a type of behavior that
00:29:48
we should be focusing on at all
00:29:50
or is it something that we should be
00:29:52
looking at
00:29:53
in terms of immediately going to help
00:29:55
the child feel
00:29:57
safer and feel emotionally co-regulated
00:30:01
through our interactions so
00:30:04
let me read you just a little story
00:30:06
about max this was
00:30:08
a not his real name of course and the
00:30:11
um the details are shifted to predict
00:30:14
identity but this is um
00:30:18
a story that i see often um
00:30:22
in the work i do when compliance is
00:30:25
pushed
00:30:26
over emotional regulation so i'll just
00:30:28
read it really quick
00:30:29
it was almost dinner time and little max
00:30:32
h5
00:30:33
who was diagnosed with autism spectrum
00:30:35
was
00:30:49
a available only to have the behavior
00:30:51
specialist
00:30:52
instruct him to sit down and finish his
00:30:54
task
00:30:55
the therapist stood in the way blocking
00:30:57
him and encouraging him to return to the
00:30:59
table
00:31:00
frustrated max burst into tears
00:31:04
screaming and striking the behavior
00:31:06
therapist in protest
00:31:08
it took him several hours to calm down
00:31:12
again
00:31:14
so what was happening the therapist who
00:31:18
was
00:31:18
undoubtedly uh well-intentioned
00:31:23
was focusing on behavioral goals without
00:31:27
regard for the child's
00:31:28
what we call social and emotional
00:31:30
functioning
00:31:32
their sense of safety in their body
00:31:35
which determines our physiological state
00:31:39
remember
00:31:40
that state of our body that is either
00:31:42
calm
00:31:43
or amped up and ready to run
00:31:46
also known as the fight or flight
00:31:48
response
00:31:51
and in the behavioral paradigm
00:31:55
the intention was for the child to learn
00:31:58
that it's important to finish a task
00:32:00
before you go on to something else and
00:32:02
it was important to learn for the child
00:32:04
to learn at this point that there were
00:32:06
rules
00:32:07
and that they were they would um be able
00:32:11
to do what they wanted once they
00:32:12
finished the task
00:32:15
what what they were focusing on was
00:32:18
compliance essentially
00:32:19
for what we would consider a
00:32:21
non-preferred task
00:32:23
and a focus on the behavior rather than
00:32:26
an inherent focus on relationships and
00:32:29
especially
00:32:30
safety in relationships
00:32:33
one of the things that i've learned
00:32:36
through my studies and particularly
00:32:38
from studying the polyvagal theory of dr
00:32:41
stephen porges
00:32:43
is that safety in treatment
00:32:46
sets a neurodevelopmental foundation
00:32:50
essentially feeling safe in your in your
00:32:52
brain in your body
00:32:54
is that really solid foundation that
00:32:57
children need
00:32:58
in order to be able to take uh new
00:33:01
things in
00:33:02
and stretch and learn new things
00:33:05
and take risks uh essentially
00:33:08
this builds resilience in all children
00:33:11
and humans
00:33:12
when you feel safe you can take more
00:33:15
risks
00:33:16
so what that what that point was kind of
00:33:20
um that point sometimes gets lost and i
00:33:24
believe that is because our education
00:33:26
system
00:33:26
is working from an outdated model
00:33:30
essentially that views behaviors in
00:33:32
isolation
00:33:33
of the child's body mind and their
00:33:36
relationships
00:33:39
and yeah that's
00:33:43
what's going to change because we know
00:33:45
that a child is more than
00:33:47
their behaviors a and b when the
00:33:50
behavior is serving a purpose
00:33:53
we want to hear that purpose
00:33:56
see that purpose have compassion
00:33:59
for that which the child cannot say in
00:34:02
words
00:34:03
the body is saying it and the child
00:34:06
can't say it in words
00:34:07
when the child is suffering when the
00:34:09
child has a stress response
00:34:10
when the child needs to move like little
00:34:13
max did
00:34:14
and his he was compelled out of joy
00:34:17
and out of the lack of self-control
00:34:20
which is still developing
00:34:22
to hug his mama and to run into her arms
00:34:25
that was way more important that safety
00:34:28
than having him learn the rule of
00:34:31
sitting
00:34:31
and finishing a task first in my opinion
00:34:35
so it's kind of like uh the old saying
00:34:38
when all you have is a hammer
00:34:39
everything looks like a nail
00:34:42
everything isn't compliance or
00:34:44
non-compliance
00:34:46
and this is the point that we need to
00:34:49
understand in my opinion
00:34:51
that we can use the information about a
00:34:54
child sensory system
00:34:56
about a child's sensory preferences
00:34:59
um and about especially their
00:35:01
sensitivities
00:35:03
because again uh in autism
00:35:07
so much is being learned but there is
00:35:11
dif there are differences in reactivity
00:35:13
to the world
00:35:15
and i believe even though i'm not
00:35:17
autistic
00:35:18
my my teachers my main teachers
00:35:21
are my autistic clients um
00:35:25
many of whom now are young adults and
00:35:27
teenagers
00:35:28
who can tell me and who guide me as to
00:35:31
what
00:35:32
life is like in their own body
00:35:35
and again there's no stereotyping
00:35:38
because
00:35:39
everybody has their own triggers their
00:35:42
own
00:35:42
sensory processing profile
00:35:45
which i think is one of the
00:35:48
was one of the gifts one of the
00:35:51
the main benefits
00:35:55
of learning this dir floor time approach
00:35:58
that i did so long ago um that helped us
00:36:02
really uh track these individual
00:36:05
differences
00:36:06
and really and treasure them and respect
00:36:09
them
00:36:10
uh as those drivers that
00:36:13
we know contribute to what we see our
00:36:16
child doing
00:36:17
so i'm i'm also a big fan uh in addition
00:36:21
to
00:36:21
to the people i've mentioned before of
00:36:23
elizabeth torres
00:36:25
who is a researcher and a brilliant
00:36:28
neuroscience researcher and the work is
00:36:30
um as a clinician i i i understand some
00:36:34
of the work but i can translate
00:36:36
uh from from what i learned from her
00:36:39
from talking to her
00:36:40
is that these automatic behaviors
00:36:43
in autism that she has studied can al
00:36:46
alway can be state regulators that means
00:36:50
that these automatic behaviors which
00:36:52
sometimes can look disruptive
00:36:55
are helping the child regulate their
00:36:59
physiological state their autonomic
00:37:01
nervous system and essentially feel
00:37:03
better
00:37:04
so she says automatic behaviors are
00:37:07
subconscious
00:37:08
survival based and not designed by the
00:37:12
child to be
00:37:12
oppositional test limits or make
00:37:14
teachers or other adults
00:37:16
uncomfortable or upset and then
00:37:20
when we target these behaviors when we
00:37:22
target
00:37:23
behaviors that are adaptive for
00:37:25
elimination
00:37:26
for example a child's um
00:37:30
need to move their body in a certain way
00:37:32
or
00:37:33
a child who has to prove
00:37:36
that they need to use their noise
00:37:38
canceling headphones
00:37:41
and that their their
00:37:46
vocalizations when they're overwhelmed
00:37:49
by background noises
00:37:50
bouncing off the walls are something
00:37:53
that
00:37:53
they can't control the child
00:37:56
shouldn't the student shouldn't have to
00:37:58
prove to us that they're not volitional
00:38:01
this is where we're getting into the
00:38:04
need
00:38:05
to respect neurodivergent brains
00:38:08
neurodivergent development and help
00:38:12
children understand that they can trust
00:38:14
their body's reactions
00:38:15
and we will help them there are so many
00:38:18
different
00:38:19
um occupations that can help children
00:38:22
trust their body's reactions better
00:38:24
such as occupational therapists and
00:38:28
physical therapists and vision
00:38:30
therapists
00:38:32
so what we really want to look at is how
00:38:35
we can
00:38:36
uh help with attunement
00:38:39
attunement is the ability to
00:38:42
help a child feel seen and heard and
00:38:45
safe
00:38:46
and before anything else the groundwork
00:38:49
across uh the
00:38:52
neuroscience on resilience across the
00:38:55
neuroscience
00:38:56
on attention focus uh what
00:38:59
um dr dan siegel calls the window of
00:39:02
tolerance how we help children grow but
00:39:06
but don't overwhelm them is
00:39:09
making sure the child feels physically
00:39:12
and emotionally safe
00:39:13
through relationships the science of
00:39:16
relationships is so solid
00:39:19
and a website that i would recommend
00:39:22
that it was just so excellent is the
00:39:24
center on the developing child at
00:39:26
harvard university
00:39:27
and dr jack shankoff has is a
00:39:30
pediatrician
00:39:31
he's written so much about this
00:39:33
translational knowledge
00:39:35
what what parents and pediatricians
00:39:38
and teachers and therapists need to know
00:39:42
about helping children feel safe
00:39:45
through relationships i have seen and
00:39:49
been in so many classrooms where
00:39:51
again well-meaning aids behavior
00:39:54
specialists
00:39:55
and those individuals who are there
00:39:58
to support students
00:40:01
have been instructed through their ieps
00:40:04
to
00:40:04
not reinforce behaviors for children and
00:40:07
so oftentimes they're ignoring
00:40:10
of the child and only waiting until the
00:40:13
child does a certain type of behavior
00:40:15
before they reward them with a kind look
00:40:18
or a pat on the back and this is what we
00:40:22
need to change because it's conditional
00:40:24
it's and it's based again think about
00:40:26
that tip of the iceberg we're
00:40:28
following the wrong lead we need to be
00:40:31
following a deeper lead a more
00:40:33
a more holistic brain body perspective
00:40:37
and when we do we can understand is
00:40:41
there stress response going on
00:40:42
is what we're asking of the student or
00:40:44
of the child exceeding
00:40:46
their ability to carry out the task in
00:40:48
the moment
00:40:49
and maybe in the next moment or in the
00:40:51
next hour or next day
00:40:53
they will have the proper support in
00:40:55
their body and from their relationships
00:40:57
to carry out that task
00:41:00
so in in doing so i i would recommend
00:41:03
that we're flexible about
00:41:04
changing plans and treatment goals and
00:41:06
that we prioritize things like warmth
00:41:09
engagement and understanding first
00:41:12
especially when we see children
00:41:15
exhibiting
00:41:15
these stress responses these stress
00:41:18
behaviors
00:41:21
so i have a worksheet in the book that
00:41:24
is entitled behaviors have meaning and
00:41:27
here um if you if you have the book you
00:41:30
can
00:41:31
see fill out these worksheets and you
00:41:33
can a teacher can fill it out
00:41:35
and this is um the first question is is
00:41:38
it possible that the child's behavior
00:41:40
is meeting a constitutional need that is
00:41:43
a need in their body
00:41:45
um does the child need to engage in the
00:41:47
movement or in the behavior
00:41:49
in order to communicate something or to
00:41:52
stay calm
00:41:54
so these are the types of questions that
00:41:56
we want to understand
00:41:57
um the second question there is it
00:42:00
possible
00:42:01
that the child's behavior is signifying
00:42:04
an underlying condition
00:42:05
such as physical pain or
00:42:09
emotional pain emotional distress
00:42:12
so again going deeper where that's why i
00:42:15
talk about going beyond behaviors
00:42:17
because we are fixated on behaviors and
00:42:19
we need to go deeper in my opinion
00:42:22
to help children feel safer a couple of
00:42:25
things that you can do
00:42:27
um as a parent if you are concerned
00:42:30
about your child's
00:42:32
uh ability to communicate with others
00:42:35
it's so important to try to support
00:42:37
communication
00:42:38
at it as soon as possible so that the
00:42:41
child can be our guide this the the
00:42:44
teenager can be our guide
00:42:46
and it's critical for for children and
00:42:50
super important for non our non-speakers
00:42:53
those who cannot communicate through
00:42:56
speaking
00:42:57
or even through um writing but
00:43:00
to get um professionals on board
00:43:04
who can help with alternative and
00:43:06
augmented communication
00:43:08
and with facilitated communication those
00:43:11
can those
00:43:12
those technologies that help children
00:43:15
and teenagers communicate their needs
00:43:18
and um many speech and language
00:43:21
therapists have specialized training
00:43:23
uh in order to do this and we we
00:43:26
really want to get that going
00:43:30
as soon as possible the other thing that
00:43:33
i recommend
00:43:34
is that there is
00:43:37
a common reassuring adult presence with
00:43:40
consistency
00:43:41
consistency across the teams
00:43:44
so if you have a team that
00:43:47
is has decided for whatever reason
00:43:51
that they are going to use a
00:43:53
reinforcement schedule and ignore
00:43:54
certain behavior i really want parents
00:43:56
to know
00:43:57
um find out what
00:44:01
the techniques are and find out
00:44:05
think about reflect on if you feel
00:44:08
comfortable
00:44:09
with what is being asked of your child
00:44:13
there are many roads to autism support
00:44:18
and while i'm talking about that i will
00:44:21
say that the two websites
00:44:24
the profectum website and
00:44:27
maybe we'll put that in the notes on the
00:44:29
youtube channel
00:44:31
as well as the icdl website both have
00:44:34
free resources for parents and
00:44:38
professionals
00:44:39
to understand better this approach
00:44:42
that is not focusing on behavior
00:44:45
management but is focusing on the whole
00:44:47
child
00:44:49
so perhaps it's the systems and
00:44:52
professionals
00:44:53
who need to change their perceptions of
00:44:54
autistic people's behaviors
00:44:56
and not autistic children who need to be
00:44:59
changed
00:44:59
so they appear more neurotypical
00:45:03
and again i say that with respect
00:45:07
but i really believe that our culture
00:45:09
our systems
00:45:11
those things are the are
00:45:14
are the structures that we need to
00:45:18
think about changing before we go in and
00:45:21
tinker around
00:45:22
with the child's behaviors without
00:45:26
knowing what we are doing to the child's
00:45:29
sense of themselves
00:45:30
and their sense of safety and their
00:45:33
sense of belonging
00:45:35
and acceptance and perhaps
00:45:38
this will help reduce the very high
00:45:41
rates
00:45:42
of anxiety that we see in autistic
00:45:45
children
00:45:46
my belief and through my practice
00:45:49
i have seen that
00:45:56
once children have less pressure on
00:46:00
being having their behaviors changed and
00:46:04
being having joy and
00:46:08
relational safety as the goal
00:46:11
rather than behavior change that their
00:46:14
anxiety
00:46:15
rates go down the anxiety gets better
00:46:19
so that's just something again something
00:46:21
something to think about
00:46:24
uh as i as i finish a couple of things
00:46:27
that that children need that all of us
00:46:29
need but um
00:46:30
predictability routines attuned
00:46:33
interactions
00:46:35
and staying calm um through
00:46:38
the storms that our children will go
00:46:40
through
00:46:41
when they are in that state of distress
00:46:44
we all go through states of distress
00:46:47
none of us
00:46:48
can stay calm permanently we have a
00:46:51
nervous system we are alive
00:46:53
life is hard and we are created we're
00:46:56
adapt we we adapt
00:46:58
humans adapt by being able to
00:47:02
do a fight or flight if we're in trouble
00:47:04
or if our body senses we're in trouble
00:47:06
and that is i think one of my main
00:47:10
goals for parents and teachers to
00:47:12
understand
00:47:13
is that when we ensure the child
00:47:17
feels safe in their own way through
00:47:20
their own individual differences
00:47:22
behavioral challenges fall away
00:47:25
naturally
00:47:26
because the social engagement system
00:47:29
this
00:47:29
uh this this ventral vagal system
00:47:34
uh as it's known in the polyvagal theory
00:47:36
is called the social
00:47:37
engagement system and when human beings
00:47:40
feel safe through social engagement
00:47:42
they no longer require the behaviors
00:47:45
that we consider maladaptive
00:47:48
and those those stormy behaviors that we
00:47:51
often
00:47:52
um that are very difficult to witness in
00:47:54
our children
00:47:56
so um in order to do that i will
00:48:00
i'll just put a plug in for self-care uh
00:48:03
if you're a provider
00:48:04
if you're a parent if your teacher
00:48:08
we are the raw material our own nervous
00:48:11
systems
00:48:12
really need to be gently taken care of
00:48:15
so that we can provide
00:48:17
that calm presence for our children for
00:48:19
our students so
00:48:21
i really believe that self-care isn't an
00:48:23
option
00:48:24
it's really essential for us because
00:48:27
then
00:48:27
we are going to be able to be that tool
00:48:29
to be that co-regulator to be
00:48:31
that presence that our children need
00:48:36
and the the bottom line is that healthy
00:48:39
relationships
00:48:40
are not optional they are the vehicle
00:48:43
that drives development forward
00:48:46
relationships joy love
00:48:49
hope feeds the autonomic nervous system
00:48:54
and it allows children to engage in
00:48:57
this larger and larger windows of
00:49:00
tolerance
00:49:01
because i know we want our children to
00:49:03
grow i know we want our students to try
00:49:06
new things
00:49:06
and to grow their strengths the best way
00:49:10
to grow strengths
00:49:12
is through having the foundation of
00:49:14
healthy relationships
00:49:16
and um if you're interested in
00:49:20
in learning more i'll be sending some
00:49:22
books over um
00:49:23
to jen but if you're interested in
00:49:25
learning more i describe
00:49:27
in detail how we do this for each child
00:49:29
in my book
00:49:30
beyond behaviors it's available
00:49:33
on amazon at reduced rates and
00:49:37
other places as well so if you if you
00:49:40
read it have any questions let me know
00:49:44
i am trying to shift the paradigm to
00:49:47
a new way of looking at things and um in
00:49:50
that regard stay in touch
00:49:51
i'm at um monadella hook phd on facebook
00:49:55
and at monadella hook on twitter and
00:49:57
instagram
00:49:58
and i post um try to post things that
00:50:00
are helpful for the community for
00:50:02
parents for teachers
00:50:03
uh to help us help our these children
00:50:06
that means so very much to us so
00:50:10
thank you for listening and i think i
00:50:13
will stop my
00:50:14
sharing right now and
00:50:17
bring jen back on hi thank you so much
00:50:22
um i definitely have questions
00:50:25
um we did get a few community questions
00:50:28
as well so
00:50:29
i'll start with those and if anyone else
00:50:32
would like to ask questions now please
00:50:33
do
00:50:34
um okay so the first question is what
00:50:38
are the main barriers for your approach
00:50:40
to become a mainstream
00:50:41
acceptable approach
00:50:47
well wow that's a really good that's
00:50:49
that's the that's a big question
00:50:53
um that is a very big question and
00:50:56
uh this is what i have to say about that
00:51:00
the the developmental approaches
00:51:03
and the neurodev it's now known as
00:51:06
neurodevelopmental but
00:51:07
you know 25 years ago when we were all
00:51:09
learning this it was
00:51:10
a more of a developmental approach
00:51:13
developmental
00:51:14
approaches were started by
00:51:17
clinicians who who studied infant mental
00:51:20
health
00:51:21
and clinicians who studied infant mental
00:51:23
health way back when
00:51:25
were not particularly
00:51:29
uh eager or able for whatever reason
00:51:33
i don't know to do research so
00:51:36
the the real answer to your question is
00:51:39
that the money is going to go
00:51:40
where the research is so
00:51:44
hope on the horizon there's a lot of
00:51:46
research going on right now that
00:51:48
supports
00:51:49
uh this approach one example is the work
00:51:52
of
00:51:52
jonathan green in the uk so they have
00:51:56
um they have an approach that it has
00:51:59
uh um study you know
00:52:03
randomized control studies and they're
00:52:04
going on with with these
00:52:06
uh different forms of research that is
00:52:09
going to
00:52:10
um eventually uh take over
00:52:14
or or at least match um what's there
00:52:17
right now
00:52:18
i'm not a researcher myself but um
00:52:21
they you can find uh the the
00:52:24
critiques of the original research uh
00:52:27
done by
00:52:28
um done at ucla on behavior therapy
00:52:31
and there are quite a few critiques
00:52:33
about that research now
00:52:35
but it is used as a um
00:52:38
as evidence so long answer to
00:52:41
your question is a few things
00:52:45
um clinicians who who
00:52:48
know it works but autistic advocates
00:52:51
themselves
00:52:53
are speaking up against behavioral
00:52:55
techniques
00:52:56
that harmed them yeah this is the main
00:53:00
push so we need to get away from
00:53:03
oh the research says this is it and so
00:53:06
we're going to fund this and i
00:53:07
call on i call on tricare
00:53:11
for our u.s military families
00:53:14
no please give families the choice
00:53:17
a lot of insurance companies are not
00:53:19
giving families the choice so
00:53:20
the the push is coming from autistic
00:53:24
advocates themselves telling us
00:53:27
telling researchers telling insurance
00:53:29
companies
00:53:30
i didn't appreciate the way i was
00:53:33
treated
00:53:35
would you like to add to that jen um
00:53:38
yeah i would say uh one of the other big
00:53:42
things
00:53:42
i mean of utmost importance to me is to
00:53:45
listen to the
00:53:46
autistic adults because they're the very
00:53:49
people who
00:53:50
have experienced this and you know
00:53:53
there's no other field i can think of
00:53:54
who doesn't take into account
00:53:56
the feedback from their patients right
00:53:58
so you know that's number one
00:54:00
um i think that a lot of schools need to
00:54:04
perhaps make it more of a practice to
00:54:07
uh take perspectives from
00:54:10
from you know the people who have been
00:54:13
through these systems
00:54:14
um the other thing is you know kind of
00:54:18
really taking a hard look at the
00:54:21
so-called evidence that does exist now
00:54:25
that you know is used as a as a
00:54:28
reason to fund certain things but it it
00:54:31
doesn't necessarily hold up to
00:54:34
the scientific rigor that we expect in
00:54:36
most
00:54:37
areas so um you know
00:54:41
i think that there needs to be a coming
00:54:43
together of
00:54:44
the autistic community who is you know
00:54:47
they're
00:54:48
like basically begging for all of us to
00:54:51
listen
00:54:52
um as well as professionals to kind of
00:54:56
you know it's like we kind of have to
00:55:00
almost be
00:55:01
forced to make ourselves a little
00:55:04
uncomfortable
00:55:06
so that we can speak up for what we know
00:55:09
because
00:55:10
all of the information that we have
00:55:12
available tells us that
00:55:14
you know we know that compliance
00:55:18
isn't helpful we know that autistic
00:55:21
people have
00:55:22
sensory differences including
00:55:25
sensory gifts um and
00:55:29
you know that it's a different way of of
00:55:31
experiencing the world and so like
00:55:34
uh we had dr dora make dora raymaker on
00:55:37
recently and i thought she made such a
00:55:38
great point because she
00:55:40
she mentioned that there's research
00:55:42
about how doctors
00:55:43
tend to have higher rates of depression
00:55:45
and suicide because they're constantly
00:55:48
having to mask their feelings with
00:55:50
families
00:55:51
they go through very tough situations
00:55:53
and have to hide
00:55:54
their emotions because they're trying to
00:55:57
have
00:55:57
you know this this professionalism and
00:56:00
so
00:56:01
like we know that when people have to
00:56:03
hide who they are
00:56:05
that it hurts them you know and so
00:56:09
autistic people would obviously
00:56:12
experience the the same feelings and one
00:56:15
of my questions
00:56:16
actually to you mona was you know as
00:56:18
someone with your
00:56:19
background um what
00:56:23
does it do to a person to be
00:56:25
misunderstood
00:56:27
for their childhood and their and their
00:56:30
you know teen years like what from a
00:56:33
psychologist's perspective like what
00:56:35
does that do to a person's
00:56:37
emotional well-being
00:56:41
well first off first i will
00:56:44
um give a uh an
00:56:47
answer that will calm parents and soothe
00:56:50
parents to know
00:56:51
that i really believe that children
00:56:54
um that the love from from their an
00:56:57
acceptance from parents
00:56:58
it carries the day so if your child has
00:57:01
had
00:57:01
um you know certain treatments that now
00:57:04
maybe you're questioning
00:57:06
just know your love for your child
00:57:09
is solid it's powerful
00:57:12
and that your child knows you love them
00:57:15
so
00:57:16
having said so that's the soothing part
00:57:18
but but just
00:57:19
imagine this um i work since i'm an
00:57:22
infant mental health specialist i
00:57:24
i see children as as young as you know
00:57:28
a few months two to three and
00:57:31
imagine that you're doing something
00:57:35
that makes you happy or you're doing
00:57:38
something with your body that makes you
00:57:39
happy or
00:57:40
or or humming something over and over
00:57:42
again or wanting to do
00:57:43
a repetitive thing it makes you happy
00:57:45
and then and then someone comes and
00:57:48
either takes it away
00:57:49
or or asks or holds it hostage for you
00:57:53
to do something else
00:57:55
i mean it gives you a message
00:57:58
it gives the child a message that
00:58:00
something that they
00:58:01
inherently treasure is
00:58:05
going to be out of their reach or
00:58:08
they have to pretend like they're not
00:58:09
interested in it so they can get what
00:58:11
they want
00:58:12
so i'm concerned about that i think that
00:58:15
it can give a child a message
00:58:17
of conditional acceptance and and safety
00:58:21
and that's what i want to change i want
00:58:24
the neuroception of safety i didn't
00:58:25
mention that in the talk but
00:58:27
neuroreception is our
00:58:28
our human um perception of threat and
00:58:30
safety i want children to feel so
00:58:32
safe and accepted and and i think
00:58:35
parents
00:58:36
are are providers and people in my
00:58:39
profession
00:58:40
and others make parents so afraid of
00:58:43
autistic behaviors
00:58:44
like oh no this is a part of of the
00:58:47
diagnosis and
00:58:48
i really think we need to stop that
00:58:49
because there are so many autistic
00:58:52
children
00:58:53
it's part of our it appears to be a
00:58:56
a part of our human diversity and
00:59:00
we it when we scare or
00:59:04
have a parent view something in their
00:59:06
child
00:59:07
as as um
00:59:10
something they need to either get rid of
00:59:12
or be afraid of it can
00:59:14
impact the relationship of calmness and
00:59:17
joy that the parent has
00:59:19
yeah um i had saved a quote actually
00:59:22
from you
00:59:23
and you said much of what i do as a
00:59:25
psychologist is undoing the distressed
00:59:27
cause to parents by the deficit medical
00:59:29
model of the dsm
00:59:30
we need not fear developmental
00:59:32
differences but use them as a
00:59:33
compassionate road
00:59:34
roadmap to deepen relationships
00:59:36
communication and joy
00:59:38
and i think that's so true because
00:59:40
speaking from experience
00:59:42
it is extremely distressing to go
00:59:44
through the diagnosis process
00:59:46
it's a deficit model every intervention
00:59:49
is based on deficits you know all of the
00:59:52
evaluations that parents
00:59:53
are listening to when they hear the way
00:59:56
that their children are being described
00:59:59
it's really not healthy it's it sets a
01:00:02
you know and when
01:00:03
uh this will go back to perhaps
01:00:05
neurosception and polyvagal theory but
01:00:08
you know when we're stressed
01:00:11
we can't think clearly and we can't make
01:00:14
good decisions and we can't
01:00:15
support our children the way that we
01:00:17
need to so
01:00:19
you know all of this
01:00:22
is incredibly important to take
01:00:26
note of because you know
01:00:30
it it directly impacts not only us but
01:00:32
our children
01:00:33
um and um
01:00:37
one of the things i wanted to mention as
01:00:39
well was
01:00:41
going back to the stimming and the and
01:00:44
the you know automatic behaviors
01:00:46
um uh because we i see that we do have
01:00:48
one question
01:00:49
referring to that um we know from
01:00:53
research that this is adaptive and that
01:00:56
you know sometimes it's it's not
01:00:58
volitional and it's like a nervous
01:01:00
system response
01:01:02
um but it does seem to be adaptive both
01:01:04
by first-hand account and research
01:01:07
so what's your advice to
01:01:11
parents and professionals because i've
01:01:13
heard professionals say well you know
01:01:15
we believe in sing but it has to be at
01:01:17
certain times or they can't do it during
01:01:18
this time
01:01:20
what is your response to that
01:01:23
my response to that is
01:01:26
consider what message we're giving to
01:01:28
the child
01:01:30
i mean if we say oh that's okay uh you
01:01:32
can stem
01:01:33
uh in in uh for 10 minutes
01:01:37
at the end of the hour or or you know
01:01:40
something like that the message is
01:01:42
this is a behavior that you need to
01:01:45
control
01:01:45
and it's it's not a part of who you are
01:01:49
it's something that will tolerate if if
01:01:51
that
01:01:52
and again hold hostage for you to do
01:01:54
your other stuff
01:01:55
the message is not of acceptance the
01:01:57
messages of
01:01:59
uh were still it's i mean it's better
01:02:03
you know it's better than just trying to
01:02:05
eliminate behavior altogether but i
01:02:07
really think we need to change
01:02:08
our our language we need to change the
01:02:10
way we view
01:02:12
and the way we value behavioral
01:02:16
differences in autism
01:02:17
and be very careful about what we fool
01:02:19
around with
01:02:20
unless we know that
01:02:24
um that you know i guess there's
01:02:27
there's another piece one one piece is
01:02:29
that we do want to make sure
01:02:31
that behaviors are not coming from
01:02:33
physical pain
01:02:35
so we really want to make sure that or
01:02:38
emotional pain so if
01:02:40
if a child is having stress behaviors
01:02:42
for example and they may have
01:02:44
reflux or tummy issues or gut issues
01:02:46
which many of our kids do
01:02:48
we really want a sensitive gi doctor or
01:02:51
pediatrician
01:02:52
online uh to work on teams you need a
01:02:55
team to make sure the child's not in
01:02:56
physical pain
01:02:58
but if the behavior is enjoyed by the
01:03:00
child if the behavior is serving as liz
01:03:02
torres says
01:03:03
an adaptive purpose to reduce the amount
01:03:06
of
01:03:06
internal suffering a child might be
01:03:08
having then in my opinion
01:03:10
why not celebrate the behavior why not
01:03:14
why not look at it and saying wow that's
01:03:17
pretty cool that your body's doing that
01:03:18
right now
01:03:19
and is there anything else you need for
01:03:21
me yeah
01:03:23
yeah i think and it's that goes into the
01:03:26
strength-based model of
01:03:28
you know look at you trying to
01:03:30
self-regulate yourself
01:03:32
like i'm so happy for you
01:03:35
you're able to do this to help yourself
01:03:38
you know be regulated
01:03:39
yes and you can say mommy or daddy
01:03:43
i do this to feel more regulated and you
01:03:46
do this to feel more regulated and
01:03:48
teachers kindergarten teachers and
01:03:50
elementary school teachers
01:03:52
can talk to the whole class about that
01:03:55
and normalize it
01:03:56
as not as something that's part of a
01:03:58
diagnosis but
01:03:59
that is something that's part of um
01:04:02
our our ability to take care of what our
01:04:05
body is asking us for
01:04:07
um and again oftentimes with little
01:04:09
children it's not conscious
01:04:10
it's just happens yeah and i
01:04:14
that also goes back to what you said
01:04:16
about um
01:04:18
um kind of like the circular reasoning
01:04:20
that happens
01:04:21
it's like oh they're doing this because
01:04:23
the person is doing this because they're
01:04:25
autistic
01:04:26
um which really you know that
01:04:29
is not that's not a good reasoning like
01:04:32
the person is trying to adapt to the
01:04:35
circumstances
01:04:37
you know that they're enduring in their
01:04:38
body and the environment
01:04:40
um which we all do it's just that we all
01:04:43
do some people have you know different
01:04:46
um
01:04:47
uh what's the word i'm looking for that
01:04:50
you know
01:04:50
they may have more intense um need to do
01:04:53
that in certain places
01:04:55
that's right and our as humans our
01:04:57
thresholds for what we
01:04:58
consider comfortable or uncomfortable
01:05:00
shift
01:05:01
so i think that's one thing what that we
01:05:04
need to appreciate
01:05:05
is that sometimes in autism the state
01:05:08
shifts
01:05:09
meaning our our fight or flight
01:05:13
you know you know sometimes that fight
01:05:15
or flight
01:05:16
urge happens fast because you can feel
01:05:19
over from overwhelmed quickly by a
01:05:22
sensory stimulus depending on the child
01:05:25
and then it's hard it's hard for
01:05:27
caregivers that's why i think self-care
01:05:29
is really important because when the
01:05:30
child is going into
01:05:32
like what we call the red pathway when
01:05:34
they go into this
01:05:36
uh as if they're running away or or
01:05:39
endangering
01:05:40
themselves or others of course we have
01:05:41
to take compassionate action and quickly
01:05:44
we have to protect the child
01:05:46
but it's a whole mind shift on on how we
01:05:48
look at
01:05:49
behaviors and and how we and how we view
01:05:52
them with compassion rather than
01:05:53
through the lens of the dsm yeah um we
01:05:57
have a couple comments
01:05:58
um which are really good uh
01:06:01
from teresa saying yes we're hearing
01:06:04
more and more from
01:06:05
adult autistics about how they were
01:06:07
injured we have to challenge what we've
01:06:08
been doing for the last 25 years
01:06:10
enforcing compliant behavior
01:06:14
and
01:06:17
wait there was one other one here um oh
01:06:20
and uh i feel like this approach would
01:06:21
also reduce the incidence of damaging
01:06:23
restraint and seclusion
01:06:25
ah yes a hundred percent
01:06:29
and if you're interested in that um the
01:06:31
uh the
01:06:32
the organization the alliance against
01:06:34
seclusion and restraint
01:06:36
by stevens beth talley uh and all
01:06:39
it's a facebook and it's an organization
01:06:42
that
01:06:43
is going to this use neuroscience
01:06:47
we use seclusion and restraint on
01:06:49
individuals who are in that
01:06:50
bright red fight-or-flight zone
01:06:53
when what they need is of course to be
01:06:55
kept safe
01:06:56
in others but what they need is
01:06:59
compassion
01:07:00
compassionate awareness that they are
01:07:02
feeling
01:07:03
so under threat so thank you for that
01:07:06
comment whoever
01:07:07
that's great yeah yeah um one person
01:07:10
said
01:07:11
uh being severe autistic and deaf means
01:07:14
you have cognitive impairment this is
01:07:16
what a director of special services
01:07:17
always says
01:07:20
absolutely not yeah absolutely not
01:07:24
um the i am i i'm
01:07:27
the the crossover with cognitive
01:07:31
impairment
01:07:31
and autism is based on old research i
01:07:34
think it's very hard to measure
01:07:36
and we have to always assume the child
01:07:39
is not
01:07:39
cognitively impaired we have to assume
01:07:42
that
01:07:43
and then communicate with the child once
01:07:46
um deaf and autistic well we have a lot
01:07:49
of
01:07:50
we have a lot of supports that that
01:07:51
child needs right we have to get a lot
01:07:53
of communication supports in there but
01:07:55
you and
01:07:56
you never assume or think oh there's a
01:08:00
good chance that there's a co-occurring
01:08:02
cognitive delay until you get to know
01:08:05
the child and
01:08:06
and when you do you know you're going to
01:08:10
find that there's
01:08:11
always thoughts and and ideas there
01:08:15
so yeah that's it we need to
01:08:18
fight that in special ed and i i again
01:08:21
um i hear statistics thrown around in
01:08:24
ieps about
01:08:26
there's likely cognitive delay but
01:08:29
oftentimes it's put out there
01:08:31
while you uh based on a test that a
01:08:34
standardized test the child's given
01:08:36
that's not uh curated for an autistic
01:08:39
individual to answer
01:08:41
so it's invalid yeah yeah
01:08:44
yeah i totally agree and i also think
01:08:46
that it
01:08:48
is very dangerous territory because if
01:08:50
people make those
01:08:51
assumptions and they withhold
01:08:54
opportunities from the person
01:08:56
they're actually causing more harm to
01:08:59
the person
01:09:00
because of their you know assumptions
01:09:03
and so we have to make sure that that
01:09:05
doesn't happen
01:09:06
oh jen we really have to make sure and
01:09:09
we especially have to make sure for
01:09:11
those children who
01:09:13
don't have advocates who have or who
01:09:16
have advocates who are so
01:09:17
stretched who are working full-time who
01:09:20
may not understand the system as well
01:09:23
and who are told things about their
01:09:26
child that
01:09:27
that may not be true you could change
01:09:29
the trajectory of a person's life
01:09:32
by having a note on their ongoing
01:09:36
um paperwork and ieps that there's a
01:09:40
that they're suspected to have low
01:09:42
intellectual
01:09:43
uh abilities and it's just um it's not
01:09:46
okay
01:09:47
yeah um and i just wanted to say one
01:09:49
more thing on that
01:09:50
um to tatiana because there's a really
01:09:53
good article by john hussman
01:09:55
and he gives a thought experiment of um
01:09:58
imagine if someone asked you your
01:10:00
favorite color and you couldn't speak or
01:10:02
move your eyes or point
01:10:04
how would you answer the question and
01:10:06
what if people just assumed that you
01:10:07
didn't understand or you didn't have a
01:10:09
favorite color
01:10:10
you know so i think that
01:10:13
is like really helpful in imagining that
01:10:16
you know if you
01:10:17
have movement differences um you know
01:10:21
you're not going to be able to answer
01:10:23
certain questions and that doesn't mean
01:10:25
that you
01:10:25
have cognitive uh disabilities it means
01:10:30
that you might have
01:10:31
motor uh you know movement
01:10:34
uh compromise yeah thank you that's
01:10:37
beautiful
01:10:38
that's beautiful and imagine that
01:10:41
that you know that locked-in-ness of
01:10:44
of when when you can't let people know
01:10:47
what color
01:10:48
you know what what you're in what your
01:10:50
ideas are
01:10:51
so never assume that a child doesn't
01:10:54
have these good ideas we have to assume
01:10:57
that the child has ideas and it's our
01:10:59
responsibility to get them
01:11:02
uh to help them show us that's our
01:11:05
responsibility not theirs because
01:11:07
they're like you said when there's
01:11:09
significant motor impairment
01:11:10
then even um sometimes pointing is a
01:11:13
challenge
01:11:14
yeah but there are workarounds there are
01:11:17
workarounds
01:11:18
yeah so the challenge could be uh
01:11:21
put back on the adults supporting the
01:11:24
person
01:11:25
and you know finding ways that the
01:11:27
person can
01:11:28
answer and that might take some you know
01:11:31
trial and error but absolutely it it
01:11:34
can't
01:11:35
it can and it can take some resources
01:11:36
but we have to do it it's the
01:11:38
the risk is too great to um to not do it
01:11:42
yeah um okay so there's another question
01:11:45
that
01:11:46
says what if the behavior is malicious
01:11:49
or planned
01:11:49
then is it appropriate to have a
01:11:52
consequence
01:11:54
so great question and then i would go to
01:11:57
kind of the definition of
01:11:59
of malicious or plan so um i'm curious
01:12:02
like what that what exactly what that
01:12:04
would mean so
01:12:06
let's just let's just have two different
01:12:08
scenarios so
01:12:10
uh take sibling rivalry for example
01:12:13
and um let's just say that a child is
01:12:16
sitting um at it at the dinner table
01:12:20
and then a high
01:12:23
or low frequency sound that nobody else
01:12:26
can except for the autistic child can
01:12:27
hear goes
01:12:28
through and all of a sudden the child
01:12:31
goes into complete stress response but
01:12:33
nobody knows
01:12:34
underneath the tip of the iceberg and
01:12:36
all of a sudden there's a fighter flight
01:12:38
and he whacks his sibling
01:12:40
well one could say that looks malicious
01:12:45
but was it malicious no it was a stress
01:12:47
response so i think my
01:12:49
the thing we need to ask is is this a
01:12:51
top-down behavior or a bottom
01:12:53
body up behavior is this an instinctual
01:12:56
response
01:12:57
in autism oftentimes
01:13:01
it's not malicious and it's not
01:13:03
intentionally
01:13:04
planned uh on the other hand if you have
01:13:08
a child
01:13:08
who is um you know
01:13:12
testing out the boundaries of their life
01:13:15
who who you may have told that they
01:13:17
can't have another
01:13:19
piece of dessert or cake and they um
01:13:24
they they sneak into the kitchen and
01:13:26
take some more cake into their room
01:13:27
that's not malicious it's just breaking
01:13:29
the rules
01:13:30
that doesn't mean you don't address it
01:13:32
and have boundaries and have family
01:13:34
family expectations and rules
01:13:37
it doesn't mean being compassionate and
01:13:39
being understanding of behaviors
01:13:41
doesn't mean that you are allowing a
01:13:44
child not to have boundaries
01:13:46
yeah all children need boundaries yeah
01:13:49
exactly
01:13:49
uh the person added a little more detail
01:13:52
said student is right
01:13:53
student is riding a horse and wants to
01:13:55
go outside instructor wants a task first
01:13:57
then go outside
01:13:58
student refuses task then spits on
01:14:00
instructor
01:14:03
stress response so let's think about
01:14:06
that i love thank you
01:14:07
thank you okay so
01:14:11
we're working on uh okay
01:14:14
we're working on if you do this
01:14:18
then you get that so this child loves
01:14:21
the
01:14:21
horseback ride the horse going on the
01:14:23
horse
01:14:24
and so the um the
01:14:28
the child uh or or teenager
01:14:31
is told that they have to
01:14:35
perform a certain thing they have to do
01:14:38
this
01:14:38
which often increases your stress load
01:14:40
right because then all of a sudden
01:14:42
you're under this performance
01:14:44
and you have the excitement of wanting
01:14:46
to do the ride the horse
01:14:48
so then they crank it and they say
01:14:52
sorry you gotta do this first in order
01:14:53
to get out to the horse
01:14:55
when their body may be really wanting to
01:14:57
go into the horse
01:14:59
all of a sudden it goes from the ventral
01:15:02
vagal system which is
01:15:03
i'm in control of my behaviors to the
01:15:07
sympathetic fight or flight and spitting
01:15:10
is a classic
01:15:11
sympathetic fight or flight behavior so
01:15:14
thanks for the detail on that i would
01:15:16
really
01:15:17
think about this if then
01:15:21
if you behave and
01:15:24
and perform for us then you get to go
01:15:27
ride a horse
01:15:28
instead of following the state of the
01:15:30
child
01:15:31
look at this child's nervous system how
01:15:34
do they need it ask them do you need to
01:15:36
move right now
01:15:36
would you like to go ride the horse
01:15:38
before you finish your project
01:15:40
what's wrong with including the child
01:15:43
as they do with collaborative problem
01:15:45
solving raw screen cps
01:15:47
why not include the student in on the
01:15:50
solution
01:15:51
so that's that was a great question
01:15:54
yeah now of course i don't know because
01:15:57
it's theoretical i'm i'm not there
01:15:59
but my guess i
01:16:02
i think too mona that isn't this uh
01:16:05
even though you know we don't want a
01:16:08
child to spit
01:16:09
you know that's not good we don't we're
01:16:12
not happy about that but
01:16:14
it's also a form of self-advocacy to say
01:16:17
like i'm not in a good place right now
01:16:20
this is you know
01:16:21
and and like i can't handle this right
01:16:24
now
01:16:24
and so even if it's not um
01:16:27
even if it's not like a behavior that we
01:16:29
necessarily like
01:16:32
like um it is a message that
01:16:35
like perhaps we need to pump the brakes
01:16:37
and like you said you know
01:16:39
realize that it's a stress response and
01:16:41
maybe we're asking too much
01:16:43
at that time yeah and it doesn't mean
01:16:46
that we are saying spitting is okay
01:16:50
that person can obviously say
01:16:53
what this is spinning is is is not
01:16:55
condoned
01:16:56
in in our setting here it's not okay
01:17:00
but that child
01:17:03
what we have to assume is that that
01:17:04
child did not want to spit
01:17:06
and if that child liked the person that
01:17:08
they spent on they probably
01:17:09
felt ashamed afterwards once they calmed
01:17:12
down and embarrassed
01:17:14
and and unable to talk about it because
01:17:17
it looked like they were doing it to get
01:17:20
out of
01:17:20
to get out of doing the homework and
01:17:22
that's the paradigm shift that we need
01:17:24
to do is to assume
01:17:26
this child if this child had the choice
01:17:29
to talk to us to bargain with us say oh
01:17:32
no i really please can we just ride the
01:17:34
horse
01:17:34
but the child didn't so the body got
01:17:37
stressed
01:17:38
and that's what we need to learn is that
01:17:39
we don't teach a lesson
01:17:41
to a child who is in that red response
01:17:43
we we
01:17:44
like whoa oh buddy that was that was a
01:17:47
big ask
01:17:48
i can see that was a big ask right now
01:17:50
and your
01:17:51
your body's upset and then let's work
01:17:53
together
01:17:54
yeah thank you so much for that um
01:17:58
okay i think i have one more question
01:18:01
um one of the biggest questions
01:18:05
or most frequent things i encounter is
01:18:09
parents whose child was just diagnosed
01:18:12
they're very afraid as we mentioned the
01:18:14
trauma that the dsm
01:18:16
you know kind of creates um
01:18:20
there but these you know parents like i
01:18:23
remember it was one of the most
01:18:24
vulnerable times of my life because i
01:18:26
didn't know anything about
01:18:27
autism i had seen things that were
01:18:30
stigmatizing and i
01:18:31
you know most of what i knew was not
01:18:35
positive unfortunately at that time
01:18:39
but i remember being like afraid like i
01:18:42
don't know if i know how to parent her
01:18:44
you know what if i mess up like you know
01:18:47
what do i do
01:18:48
how do i help her so what and
01:18:51
and i we're gonna link in this video
01:18:55
um because i love your article for the
01:18:57
10 things to ask for when your child is
01:18:59
diagnosed
01:19:00
i think it's helpful and i share that
01:19:02
with a lot of parents actually
01:19:04
um but what advice do you have for
01:19:08
new parents who are in that space of
01:19:11
like being afraid and trying to figure
01:19:14
out what's next
01:19:18
well um
01:19:22
i i i want them to know
01:19:26
that this field
01:19:29
like the field that i'm in the field
01:19:31
that we're in of
01:19:33
of those professionals who are charged
01:19:36
with diagnosing
01:19:38
um and and helping children with
01:19:41
differences
01:19:42
the field is in a huge shift
01:19:45
right now and so there's a chance that
01:19:48
you would get somebody like me
01:19:50
that would say you know what i'm going
01:19:52
to tell you something that is
01:19:54
kind of could potentially be really
01:19:57
rock your world but i'm going to tell
01:19:59
you something else first
01:20:01
and then something else first is that um
01:20:05
you have an incredible child with some
01:20:06
brain wiring differences
01:20:09
and we're you go you're going to have a
01:20:11
great team to help you figure out
01:20:14
how to support your child and this is
01:20:17
going to be something that is um this
01:20:20
is your child this is the we we are we
01:20:23
don't have to
01:20:24
um you you are going to
01:20:28
hear a lot of different opinions some
01:20:32
of what you're going to hear is that
01:20:35
this
01:20:35
is a disorder and that it needs to be
01:20:38
treated
01:20:38
and it needs to be treated with a
01:20:40
certain protocol
01:20:43
and i just want parents to know that
01:20:47
they're it's like it's a good time now
01:20:49
is a good time because we know more than
01:20:51
ever we have autistic advocates
01:20:53
we have a new approach a developmental
01:20:56
compassionate
01:20:57
loving approach that can help
01:21:00
all students and then you can figure out
01:21:03
which behaviors you want to tinker with
01:21:05
and what you just let be
01:21:08
so i guess what i what i'd say is no
01:21:11
there's so many choices out there
01:21:13
there's a lot of different
01:21:14
opinions some of those opinions are
01:21:16
going to rock your world
01:21:19
and i want you to know that you don't
01:21:21
have to let them rock your world because
01:21:23
there are resources out there for you
01:21:25
to hear um from other parents and from
01:21:28
autistic individuals themselves
01:21:30
that this isn't a condition that we need
01:21:32
to despair about
01:21:34
or or have um
01:21:38
or have have sadness about this is
01:21:42
a human diverse brain
01:21:45
which is part of why our world is so
01:21:48
amazing
01:21:50
and i guess the other thing i would say
01:21:52
is that
01:21:53
i've had the privilege of working with
01:21:57
individuals who are diet who i diagnosed
01:21:59
when they were two or three and now
01:22:01
are in the world happy
01:22:05
loving in different situations
01:22:08
connected amazing people so
01:22:14
just don't get thrown by a diagnosis
01:22:19
yeah yeah compassion for yourself for
01:22:22
providers for your
01:22:24
your child and i guess there's also one
01:22:26
last thing i i'll say
01:22:28
and that is that if your provider
01:22:32
if you have a provider that is doing
01:22:35
uh an intervention or suggesting an
01:22:37
intervention for you
01:22:38
that goes against your instincts your
01:22:41
family's culture your
01:22:43
family's values um and especially your
01:22:46
instincts as a
01:22:47
as the parent of this child
01:22:50
you you don't have to go along with it
01:22:52
yeah you just say no
01:22:54
you can say i i don't feel comfortable
01:22:56
with this and
01:22:58
talk to the supervisor talk to the um
01:23:01
talk to the team and get the type of
01:23:04
treatment that
01:23:04
you feel best supports your child's
01:23:08
social and emotional development they're
01:23:10
feeling loved they're feeling safe
01:23:13
and their their communication supported
01:23:16
so they can let you know what they want
01:23:20
yeah i agree um
01:23:23
[Laughter]
01:23:25
i think so i think that was the last
01:23:27
question we had from the community
01:23:29
um i just wanted to tell you again what
01:23:33
a difference you've made
01:23:34
and i like i said
01:23:37
i suggest your work to every person i
01:23:40
know because it's so transformative
01:23:42
and like this is what our kids deserve
01:23:47
our kids deserve to be accepted and
01:23:50
loved for who they
01:23:50
are to be understood with
01:23:54
as much information as we have today um
01:23:57
you know and and um i'll mention that in
01:24:01
uh
01:24:02
next month we have dr dora raymaker
01:24:05
coming back
01:24:06
and she's going to be talking about
01:24:07
autistic burnout and the new research
01:24:09
that they have on that as well
01:24:11
and so these things are all connected
01:24:14
the emotional well-being of our children
01:24:17
the importance of that
01:24:18
cannot be understated um the need for
01:24:22
attachment
01:24:23
with our children can't can't be
01:24:25
understated
01:24:26
there's research about this um from
01:24:30
uh people like oppenheim and um
01:24:33
maybe singletary you know about the
01:24:36
importance
01:24:36
for uh caregivers to be attuned to their
01:24:40
children's needs and to try to
01:24:42
understand their children's perspectives
01:24:44
um and so everything that you do mona is
01:24:48
is aligned with not only the
01:24:51
neuroscience but with best practices in
01:24:53
all children's mental health and
01:24:55
emotional well-being and i just
01:24:57
so appreciate your voice and your
01:24:59
knowledge
01:25:00
and um i'm i'm really looking forward to
01:25:04
being able to give some of your books
01:25:05
away because i think it's such a
01:25:07
valuable
01:25:08
resource and same with your website um
01:25:12
we'll link to that as well um and i'm
01:25:14
just so happy you were here today thank
01:25:16
you so much
01:25:17
thank you so much your words are just
01:25:19
fill my heart
01:25:20
and thank you so much and you're right
01:25:23
it's when i realized that these these
01:25:26
standard best practices are
01:25:30
what we demand for neurotypical children
01:25:35
for all children look at the harvard
01:25:37
center on the developing child
01:25:39
it's it's what um neurons to
01:25:41
neighborhoods
01:25:43
set out as every child and then there's
01:25:46
a update
01:25:47
um call i think called raising healthy
01:25:51
raising healthy children from from a
01:25:53
huge panel that says all children
01:25:55
deserve
01:25:56
to grow up in loving
01:26:01
supportive compassionate relationships
01:26:03
and so
01:26:04
we need to insist on that for our
01:26:06
children who are who are on the spectrum
01:26:09
and um and that's uh
01:26:12
that's that's what's uh that's pretty
01:26:15
cool that
01:26:15
we're making that happen so thanks for
01:26:17
having me take good care
01:26:19
yeah thank you so much you too um and
01:26:21
just one last note
01:26:22
uh we have a webinar coming out
01:26:25
next week in the next two weeks with the
01:26:28
autistic women and non-binary network
01:26:30
on whether virtual interactions are
01:26:32
really accessible
01:26:34
we also have dr christina nicolaitis
01:26:37
coming back
01:26:38
on november 12th i believe
01:26:41
um on autistic adults in healthcare and
01:26:44
then we have dr dora raymaker on
01:26:45
november 19th
01:26:47
um so we hope that you'll all join us
01:26:49
again soon
01:26:50
and thank you so much again um dr della
01:26:54
hook
01:26:55
thanks for having me take care thank you