Theresa Lyons: Navigating Autism: Science,Hope and Advocacy

Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide?
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Tune in, be inspired, and join us in transforming the world,
one story at a time. I'm hi, I'm Tony Mantour.
Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide.
Joining us today is Teresa Alliance, ms, MS, PhD and
a Yale University trained scientists, medical strategists, and autism parent.
She will share her daughter's diagnosis of autism, which ignited
a passionate commitment to empowering families worldwide. We will discuss
her platform, Navigating Autism That's awe Tism, as well as
her acclaimed book, The Lions Report twenty twenty autism and
functional medicine doctors as a beacon of hope and expertise.
She reminds us that autism is not a verdict, but
an opportunity for healing and growth, driven by science, intuition,
and unwavering advocacy. It's a pleasure to have it here.
So before we dive into our episode, we'll be back
with an un erupted show right after a word from
our sponsors. Thanks for coming on.
Yeah, thank you, thank you for having me. I appreciate
it doing this.
Oh, it's my pleasure. Great to have you here. It's
my understanding your journey with autism started when your daughter
was diagnosed to autistic. Yes, can you give us a
little background and how your journey developed over time once
she was diagnosed.
Sure, So let's see, my daughter was about three and
a half years old when she was diagnosed. She was
on the more profound side of autism, so it wasn't
necessarily a surprise. But with an autism diagnosis, there's no tests,
there's no blood tests, there's no MRI, there's no piece
of paper based upon some like cellular expression in her
body that it's autism. So you know, we went through
hearing tests, and we did so much just to rule
out anything else, and then it was like, okay, there's
really nothing else left. So we got the diagnosed of
autism from a developmental pediatrician. Those are very hard to
get appointments with. I think there's only about eight hundred
of them in the United States, so waitless are long
and everything, and really getting the diagnosis was just the beginning.
I have a PhD in chemistry from Yale. I worked
in the pharmaceutical industry. I worked in R and D.
I worked as a medical strategist, so I had so
much background that then when we were given this diagnosis,
I'm like, Okay, what's next. And that's really when there
wasn't a plan. There really wasn't a definitive answer to that,
and that was really my starting point for everything I do.
Now that makes total sense. How long ago was.
That, Ah, that was over ten years ago.
Wow, Okay, if it was ten years ago, that's when
not a lot was known about autism. It has progressed
from the nineties to now, but you're right in the
middle when it was starting to progress. So when we
think about it, ten years ago, autism was really still
fairly unknown to most of the population. Yeah, so how
did you cope with that? I mean, you get this
autistic diagnosis, not very many people know about it. They
don't know how to handle it, they don't know anything
about it. So how did you deal with that?
So that's where my training and pharma really paid off.
So I applied everything I learned in grad school and
working in the pharmaceutical industry and I went to pub
Med for the answers. So I knew how to get
to the cutting edge of a therapeutic area, in this
case autism for my daughter. I was doing it professionally
in other therapeutic areas, so working on different projects. They
call it key opinion leaders. So those are the doctors
in the field that are doing the research that are
really driving what the gold standard of care is based
on clinical trials. So I understood all the ins and outs,
and I used to pop some popcorn, I get my
daughter to bed, and then for like fun quote unquote fun,
I would just go to PubMed because these were all
skills that I had. So I was like, all right,
let me familiarize myself with who's doing the research, what
the doctors are saying, and the information that's in PubMed
is typically thirty years ahead of what's being practiced in
mainstream medicine. So that's how long it takes to go
from a discovery to mainstream practice.
Okay, that's very interesting to know. Now, what were some
of the obstacles that you faced during this time?
Oh my goodness, there are a lot.
Oh I'm sure you can go on and on with
all the obstacles, But what sticks out of your mind,
what just stands out that you had to go through.
The version that comes to mind is me and my
thoughts and my beliefs and not really understanding how much
of an influence I could have really on the outcome.
I would just listen to I remember reading this article
on Yahoo. There were two articles about autism, and it
was pretty soon after my daughter's diagnosis, and it was
saying about how autism is this lifelong diagnosis and it
was very bleak, these two articles, and it's on Yahoo, right,
So I'm like, oh, my goodness, is you know, like
I'm reading PubMed and I'm reading scientific articles that are saying,
you know, ten percent of those diagnosed with autism lose
the diagnosis, and you know, there are many different publications. Nowadays,
the latest research shows that thirty seven percent of kids
diagnosed with autism lose the diagnosis, meaning they regain their health,
they catch up academically, socially, everything like that. So I
was conflicted, right, and it was just like, Okay, I
know what PU metic saying, that's the real science. That
is what I should put weight on. But then I'm
reading this article in Yahoo and it seems the way
it's written was just so convincing. And there were two
of these articles. So then I ended up contacting that
the author and asking him about, you know, the research
he did and he can fast to music listen. I
had a really tight deadline. I put maybe an hour
or two of research into those both articles. I just
like that was me. I was the obstacle because I
allowed myself to be swayed by a piece of information
that wasn't really accurate. So it's a long journey, and
I feel like it's something that it doesn't just involve
the child. There's so much growth with the parent, and
so for me, I would say I was the biggest
obstacle at first. For sure.
Yeah, I get that completely. A lot of people they
just do not realize when a child is diagnosed autistic,
it is not just that one child. It is not
just the parents. It creates a community parents, grandparents, brothers, sisters, doctors,
everybody that's in that community can come in contact with
a person that's autistic. It can create a huge circle
of people, and most people do not realize that. Now,
with all the people that you had to work around,
kind of a maze of people. Some thought they knew
more about it than you did, some didn't. How did
you deal with that?
Well, that was definitely something that I learned where it
was I need to be careful as to where I
take information in from and you know how valuable it is,
because that really really upset me in that moment. And
so if I had listened to the Yamu articles rather
than you know, asking him questions, reaching out to the
author and really trying to understand where he's getting this
information from, I might be in an entirely different place now.
So it's really important when you're talking to someone who's
giving you maybe advice, to understand how often they keep
up to date with the literature, how current are they
There's very well meaning people, but it's really the information
that makes a difference because there is so much search
going on and it takes so much time. So you know,
thirty years right, If I had waited thirty years, my
daughter would being mi an adult. So it's it's important
to seek out information, but to really have that barometer
within yourself and to know yourself well enough to say, okay,
do I trust this? Does this make sense? Is there
consensus here? And what does my intuition say? So as parents,
a lot of times we know there's something wrong with
our child, and when we bring it up to you know,
doctor's appointments or family and friends, a lot of times
well meaning they say, oh, you know, kids development developed differently.
But that's where parents learn to negate their intuition. So
many parents have that inner knowing of what to do
and then it just gets negated. So really cultivating that
and when you hear that, if someone gives you advice
or opinion or fact and your intuition, your gut is
saying no, this is this is not true for my child,
You've got to follow your gut for sure.
Yes, I agree wholeheartedly. Parents have to trust themselves because
they know their kids better than most people. One of
the things that I've found and see consistently is a
lot of people think they know about autism that really
don't know about autism. They give their opinions, but they
have not done any research to validate their opinions. That said,
when a parent initially finds that their son or daughter
is autistic, it's the big unknown. They're trying to figure
this out, they're trying to find advice. There's just so
many unanswered questions. Now that you've been through this, you've
lived through it, you've assembled all this knowledge, what is
the pathway that you think best fits people that are
trying to figure this all out.
So really taking a pause and coming to terms with
it yourself before or trying to take action. Because when
someone tries to take action, when they're in panic mode,
right like, oh my gosh, okay this just happened, we
got the autism diagnosis. Okay, I'm just going to try
and do everything possible, right, Like, you're taking action from
a very frantic mindset. It's really hard to be successful
in anything when you're taking action in that way, right,
You're going to exhaust yourself. You're going to feel like,
oh my gosh, I'm trying so many things that it's
not working. Really just having that pause to gather yourself
and say, Okay, who do I want to tell first, right,
because when you start telling people, then lots of opinions
start coming flooded at you, so you have to be prepared.
So it's really getting yourself set and then maybe telling
one or two people externally from the immediate family, and
then coming up with ideas and having people you always
want to have someone can I bounce ideas off? You
don't tell me like what your opinion is, but sometimes
I have thoughts and I just want to talk it out.
So having different people like that in your life and
letting them know what it is they can do to
help you. Sometimes it's like you just need to go
out for like a coffee or a walk and not
talk about autism. So you might need someone to just say, listen,
let's go get coffee, but listen, I don't want to
talk about autism whatsoever. Let me just have this break
in my mind. And it's okay to do that. A
lot of times parents feel like I have to take
action immediately, I have to do everything, and if I'm
not doing something, then you know I'm not being a
good parent to my child, and you definitely want to
take action, but you want to take action from a
very logical standpoint and being very strategic about it. So
that really is that first step in the path where
it's like, okay, let the diagnosis, let that kind of
roll over you and understand, Okay, things are going to
be different. Doesn't have to be necessarily a negative experience.
This doesn't have to be, you know, a terrible childhood
for my child. But let me get myself straight and
that looks different for each parent, and then let me
start recruit a team. Let me start you know, getting
family members on board and letting people know how it
is they can help me and what it is. Maybe
that is not helpful.
Yeah, great advice. Now ultimately you wrote a book later.
On, Well, there's many steps in between.
Okay, let's go down that journey. What were the steps
that led to this book?
Okay? So I tend to be a very organized person,
and when I do something, I do it very well.
And so I was able to start to focus on
my daughter's health and understand PubMed and understand the research
and start to book together a healthcare team for her
of doctors who were doing clinical trials so I could
get the latest information. And they were the ones who
suggested I start a blog or write a book because
I would come very prepared to the appointments. We would
have an agenda, and I wasn't really there as mom.
I was really more focused in, Okay, let's talk about
what's on the agenda. What are the best things to
do for my daughter? And so it was really the
doctor's idea that I start something. I thought it was nuts.
I was just like, what, like, I'm fucking start my daughter.
I'm not that's my only focus.
So did it start out with autism? That's awetism?
Yeah, well yes, my blog and the book it's all
based upon navigating autism. But I spell it awe tism
because it took I'll just say it took a few
years for me to see autism in a very beneficial
and positive light because when my daughter was first diagnosed,
I hated that word autism. It meant like everything was
going to be more difficult, and you know, like just
everything negative associated with it was carrying that word. So
I knew myself, I need to change how I think
about autism. So then I was able to start to
look as my daughter started getting healthier and doing different things,
then I could see, oh my goodness, wow, she had
a headache, and she had this, and she had all
of these health issues, and yet she was still getting
up every day day and trying her best and going
to school and she wants to learn. So like that
was the autism where I could see her strength and
her determination. And that's really when autism shifted for me
and became a different, different experience for us for sure.
Yeah, that makes sense. So all this happened, but the
blog came first, and.
Then it was the blog yep. And then I started
working with parents one on one and they would ask
me really to help navigate the science for them. So
it was about, okay, let's get a good healthcare team together.
And they were in different parts of the world, right,
so I had to really come up to speed with
who's local to them, who's good. If I was there,
would I have done? So I started making this directory
of doctors who were really good in focusing on autism
and also functional medicine, which means really getting at the
root cause. So when you go into a doctor and
you say, okay, my child is you know, laughing uncontrollably, right,
A functional medicine doctor will say, I wonder, why, let's
figure that out, whereas maybe a conventional medicine doctor might say, well,
that's just part of autism. Right. So I had this directory,
and that's really what I published in the book, so
that other parents could have access to that information and
get to quality health care much sooner.
So the Autism Book, along with your Autism blog, that
really changed a lot of things, not only for the
parents that were learning from it. I'm sure that it
changed your life as well.
Yep.
So how did you see these changes? You went from
an autism mom putting all these things together to becoming
an autism advocate, this helping so many people around the world.
Well, it definitely wasn't planned at all whatsoever. And with
many things in life, it was just one little step
and then take the next step. And really, as my
daughter got healthier and healthier, she needed me less. I
had the choice of Okay, really forget about autism and
let me go on with my life and I'll go
back and get a job and stuff like that. But
this has really become more of my dharma where it's
like I have this knowledge, I have the ability to
communicate it. Am I okay with not sharing that? And
I wasn't. I'm a shy person. I'm not someone who's
on social media to you know, get famous and all
that kind of stuff. It was more if I was
a parent who just had a child who got diagnosed,
I would want me to teach me the science. So
I was not okay with just leaving and having all
that information. I could help so many people and just
not doing it.
Yeah, and I think that's just awesome. So once you
got that all streamlined, it was up and running. Everything
was going smooth. Then came the book.
Yeah, they came the book. As I started working with
more and more parents, I started having a wait list.
So this is really where I was like, Okay, how
can I help more people?
Right?
So it was let me take the information of body doctors.
Let me explain what functual medicine is. Functual medicine is
typically not covered by insurance. You have to pay out
a pocket. It took me a while to come to
terms with that. When I was faced with these decisions,
I was like, oh my goodness, I have to pay
Why can't I just use insurance? So it took me
time to understand that part of us healthcare. So it
was really how can I help parents make those decisions faster,
whether it was a yes or no? How can I
help them make those decisions faster? And so that's really
what the book was about, explaining functional medicine, explaining why
it can help and it's needed in certain regards, and
then really connecting parents to body doctors because there are
a lot of doctors out there who might say they
know what they're doing, but they really don't. And if
you're spending two hundred five hundred one thousand dollars, you
really want to go to a good doctor. So it
was really just helping parents figure that out who's good
for them?
Yeah, that's a lot of it for me. Now, how
big is the book and how much does it cover?
So the book it was published in twenty twenty. There's
an update coming out in twenty twenty six. The book
explains the research and autism, letting parents know how an
autism diagnosis is not lifelong, and listing out the different
publications scientific publications over the decades that give that information.
It used to be called an optimal outcome when a
child has a lost to autism diagnosis and continues on
in their life with school and not needing supports or
anything like that. And now the new term in the
scientific literature is non pervasive autism. So even just what
scientists and doctors how do you label this is changing
as more and more kids don't retain that diagnosis for life.
So it explains that because that's new for many parents
where they're saying like, really, I didn't know autism wasn't lifelong,
and listing out the scientific publications they can see, yes,
this has been studied for decades and it has been known,
and then going over different clients, that is important to
understand in the beginning. We also have something called the
navigating autism matrix. So autism is so complex, right, You
and I have been talking mainly about healthcare, but we
haven't touched upon diet. We haven't touched upon the supplements
or prescriptions, probiotics. Mindset. We talked a little bit. My
mindset was something I had to improve quite a bit.
Celebrating success and school, so all of this right has
to be going on all at once. So as I
worked with parents, it was like, how do we organize
everything that we're doing how do we keep track to
make sure we're hitting all those different categories. It's really
just systematizing everything that has to go on, which is
a lot.
It sure is, and unfortunately we just don't have the
time to address every single thing that we could talk
about on this podcast. Yeah. No, yeah, yeah, there is
one thing I think is very interested that you said that.
I think we need to just discuss a bit. You
said autism isn't a lifelong situation, but that's just a
small percentage of all people. If they're not lifelong diagnosed. Basically,
what that means they would be out there living what
everyone would perceive is your typical, quote normal life.
Yeah. I don't like using the word normal. The normal
is not anything I inspired to whatsoever.
Yeah, I agree. I had a person tell me one
time that just because he is a little different doesn't
mean that's not his normal, and he's one hundred percent correct.
I think that's a great thing to put out there,
that every person's normal can be different. Yeah, but it's
their normal. So I just wanted to make sure that
what we were talking about that we were on the
same page.
Yeah, it's not one hundred percent at all. So the
latest research showed thirty seven percent. And it's important though
for parents to really understand the health issues of.
The child, right, Yeah, absolutely.
Because there's always things that can be improved in health
that maybe doesn't push the needle to thirty seven percent,
but maybe you take a child who wasn't able to
sleep during the night, who sleeps during the night, right
by analyzing different things, that is worth it. So there's
a lot of different things about health that kind of
gets lumped into or that's just autism. You're going to
have OCD, You're going to have anxiety, and it's not true.
So addressing those things, it's the autism a diagnosis that
remains is there's absolutely nothing wrong with that, But you
want to make sure your child gets quality healthcare because
many times when you have an autism diagnosis, you are
given substandard healthcare, which is totally unacceptable.
Absolutely. In your blog and in your book, you also
get into other things like diet and every day things.
Correct. Yeah, all of it has to be addressed, but
not necessarily all. At the same time, it's about building synergy. Right. So,
like the sleep example I just gave, if a child
goes from not sleeping to sleeping, which also means a
parent goes from not sleeping to sleeping. Right, So much
has changed, and the research shows that when a child
with autism does not get quality sleep at night, the
autism symptoms increase during the day. Right, So sleep actually
influences the severity of autism. So just having that sleep
can then allow someone to be more curious in school
and naturally look at things in life differently. So that's
really the important aspect to understand about all the science.
Yeah, now we've covered a lot of things, We've missed
a lot of things. What do you think is really
important that the listeners hear about what you've gone through,
what you've learned, and how you're trying to help them
to better understand their autistic children.
I think it's important for parents to trust their intuition
because most parents know that there's some kind of health
issue that's holding their child back because they can see
their child like either looking at sports or looking at
the family playing board games, or maybe even trying to
do different things, or just not feeling comfortable in their
own skin. Right, But the parent has that gut intuition
and it's so hard sometimes to go against what is
in social media and mainstream, but really to listen to
that intuitive voice, that gut that's telling them go this way,
go this way. No, there's something we can do to
listen to that, I think is really that starting point,
and that's something I really hope to instill in parents,
because I know I didn't listen to mine, and once
I started, just so much opened up. And I speak
to so many parents who say, I knew this X
was wrong and I just didn't listen to myself. So
that's really that important aspect that I want parents to understand,
and also to really understand autism from that a sense
of things may not be all rosy and there may
be some real challenges in your child's life, but if
you can look to see how determined and just how
persistent their child is, it can really shift a lot.
Yeah. I've had many autistic people on my podcast. The
one thing many of them have in common is they
say autism is their superpower.
Being determined and persistent.
Yeah, that's a big part of it. Plus they have
super focused along with other things they do that the
neurotypical person sometimes just does not have. So they say
it's their superpower.
It can but there's also some very real challenges that
come across. So, I mean once that is tough as
a parent to really understand, is life expectancy of someone
who retains an autism diagnosis is greatly reduced. So for
people who are on the more high functioning side, deaf
by suicide is something that.
Is Yeah, that's the second leading cause of death among
autistic people around the world.
Yes, and then for on the more profound side eloping,
drowning accidents. So life expectancy is in the thirties in
the United States for someone who retains the autism diagnosis
based on the latest research. So there is a superpower,
but there are very real challenges. So it's the determination
and the persistence that is the beauty of autism because
there are so many challenges in which it's needed.
Yes, and they're very focused. Once they get into something,
they start researching, they just do not give up. They
keep persisting until they know everything there is to know
about it. One of the many great things that they do.
Yeah, and some kids with autism can express that, but
some kids who are more on the profound side, you
see a lot more of the challenges, right, So you
see a lot more the behaviors, and they don't even
get a chance to really engage in school. That is
at their academic level of understanding. It's really more at
their ability to express, which is many times much much lower.
And that's when problematic behaviors happen, when kids are bored
and not really challenged academically based upon just the behaviors
and the symptoms related to the severity of their autism.
So ivan focus is certainly great and definitely is a superpower,
but just not everyone with autism can get to that
point of having that in their life. But everyone should.
That's the thing. Everyone should have that chance in life
to find what they really love and focus on it
and become determined and successful at whatever interest them.
That's right, exactly. Well, this has been great, great information,
great conversation. I really appreciate you taking the time to
join us today.
Oh my pleasure. I've enjoyed this conversation, the good questions.
Thanks so much, it's been my pleasure. Thanks again, Thanks
for taking time out of your busy schedule to listen
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