Getting Parents Involved In Therapy for Children with Autism | Parent Support for Autism

As parents, it can be scary when your child
is first diagnosed or showing signs of autism. Instead of being scared, we should be jumping
on the bandwagon to help our children as early as possible with or without a diagnosis and
with or without a therapy team. But how do we get over that fear to help our
children have the best outcome? I’m Dr Mary Barbera, autism mom, Board Certified
Behavior Analyst and bestselling author. Each week I share some of my tips on turning
autism around so if you haven’t subscribed to my youtube channel, you can do that now. Today I’m sharing a small excerpt from a podcast
interview I did with Dr Melanie Pellecchia, a researcher from the University of Pennsylvania
and a Board Certified Behavior Analyst. Dr Pellecchia talks about parent involvement
in early intensive therapy and the best possible outcomes to help you get out of denial and
fear and start helping your child. Now that the rate of autism is so high, when
Lucas was diagnosed back in 1999, the rate was thought to be 1 in 500 and now it’s closer
to 1 in 50, depending on which study you look at, you know, 1 in 58, 1in 40. Um, and so there’s such a, a high rate, there
is a less stigma attached to getting diagnosed. There’s much more proof that early intervention
is really key. And to get intensive intervention, a lot of
times you need, uh, a diagnosis. There’s a very long waiting list for, um,
for developmental pediatricians. And so, you know, my, one of the goals of
my online course is to provide to parents and early intervention providers some, some
real good strategies, ABA evidence based strategies to start making progress without a diagnosis,
with or without a diagnosis, with or without a team of professionals. Because I really do think that starting with
the Lovaas study published in 1987 as well as many of the other subsequent studies that
shows that the power of ABA is a lot of times it is. Um, also a big factor is the dedication and
time commitment. And, um, of, of a parent, usually a mom. Um, do you have any, um, you know, are you
in touch with any research or have you done any research to show that moms or parents
in general have a big part in that, um, you know, best outcome rate? Yeah, so it’s actually what, um, I’m currently,
uh, researching right now. Um, and so I have, um, an award that is funded
through the Institute of Education services, through IES um, and an award that is hopefully
going to come through, um from the National Institute of Mental Health. Um, both are, um looking at how early intervention
providers working in the 0 to 3 system are able to support parents of children who either
have autism or who are at high risk for going on to get an autism diagnosis. And so I think what you’re keying onto is
this notion which we’re seeing a lot in the literature about parent mediated interventions,
um, and parents, um, being empowered to, um, support their child’s development. And that doesn’t mean they become their child’s
primary therapist. We certainly don’t think that’s the case. But we, I do think that there’s a lot of research
showing that parents who, um, are able to learn a lot of the strategies that are going
to, um, help their child be successful, um, are more empowered, are more, have a higher
self efficacy, the parents have less stress. Um, and then we see, uh, better outcomes for
kids, um, because they have parents who are able to support their communication development
all day long instead of just the, you know, 10 or 15 hours of therapy time that they’re
getting. And so if the parents are integral parts of
that, um, intervention, um, then we’re seeing a lot of gains. And so my research is, um, in figuring out
the best ways to implement those kinds of parent mediated interventions within the community
settings because, um, what we’re, what I’m learning is that, um, although a lot of early
intervention providers, um, are, are certainly well-intended and, um, support families as
best they can. I think there are some evidence-based parent
coaching strategies, some evidence based strategies that we know can affect change in parents’
behavior, which would then affect change in their child’s behavior. Those often aren’t implemented, um, in community
settings. And so trying to help early intervention providers
teach parents, um, as opposed to working directly with the child for the bulk of their session. And so how can we, um, collaborate with parents
during sessions? How can we coach them and model and demonstrate,
um, and then have the parent demonstrate some of these skills in a way that, um, would show
that they were able to implement them successfully, I think is something that we see as lacking
in a lot of the early intervention systems. And um, hoping to change that. Yeah, I think that’s a big, it’s a big issue. I know one of the members of my online course,
um, my toddler course early on, she was driving, she finally got her son off the waitlist for
speech therapy and she drove him 70 miles away to her appointments and the speech therapists
policy, this is a 2 year old with no language. The policy was that the parent couldn’t
come back into the room. She was told to wait in the waiting room. The child was, you know, having separation
anxiety. Didn’t know this person, was screaming the
whole way back. I mean she was literally told like, you know,
some parents just go shopping and she and this woman had taken, was in my online course. Like that’s not my belief. Like we need to partner with professionals
and parents need to partner together. That’s why everything I do, my book, my podcast,
my videos, my online courses are for both parents and professionals because it’s like
we need the expertise of the professionals. Um, but we need the power of the motivation
of the parents and the fact that they can provide that, that 24/7, you know, kind of
therapy strategies is like, no, you know, like, so I, and the other point to that is
just because you can get speech therapy, ABA, whatever, and just because it’s funded doesn’t
mean it’s that person or that place is the right fit. And then parents have to navigate that system. You know, they just got off the waiting list
and now they’re met with resistance and lack of collaboration. And, and it’s just like I could tell you stories
from hundreds of members of my online courses of frustration that it’s just like, you know,
we need to leave our egos at the door and we’re really, everybody should just be worried
about the child making their best progression. Yeah, I totally agree. And I think, um, something similar that I
always tell parents who are navigating like the new, um, you know, time of when they’re
getting services for their child is that, um, they should be involved and they should
ask to participate in sessions. And if they are going to someone that says
like, you’re not allowed to come into the room, then I might, you know, question that
and say, why and how can I help my son if I’m not allowed to watch what you’re doing? How can I learn what you’re doing? Um, and I think that, um, empowering parents
to be able to ask those questions and to know that they’re OK, um, it’s OK to ask those
questions is really important. And, um, you know, it’s a time where I think
a lot of families are just um so excited to get service that, um, they don’t, they don’t
want to question, uh, those kinds of statements because of fear that they won’t be able to
keep that service, which we certainly know we, we shouldn’t be doing as professionals. If you enjoyed this episode, I hope you give
me a thumbs up, share this video, leave me a comment and I hope that if you are interested
in learning more about how you can join my online course and community, you’ll go to
marybarbera.com/workshop and I hope to see you right here next week.

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