My Autism Journey After 20 Years: 5 Pieces of Advice for Parents | Advice for Autism

My Autism Journey After 20 Years: 5 Pieces of Advice for Parents | Advice for Autism


July 2nd, 1999 was Lucas’s diagnosis day. This was one day before his third birthday,
so it’s easy to remember that day. Lucas just turned 23 this week. So I thought I would do a video blog this
week looking back on the advice I would give myself way back two decades ago and hopefully
this might help other moms and parents and grandparents who are just getting children
diagnosed and feeling the way I felt probably 20 years ago. So I’m going to cover this important topic
this week. Hi, I’m Dr Mary Barbera, autism mom board
certified behavior analyst and bestselling author of the verbal behavior approach. Each week I provide you with some ideas about
turning autism around. So if you haven’t subscribed to my youtube
channel, you can do that now. This week I want to wish my son Lucas a very
happy 23rd birthday, 23 turning 23 is not a typical milestone that we would necessarily
have a big uh, full-out, uh, celebration of like reaching 18 or 21 for instance. It does mark 20 years since Lucas was diagnosed
with autism, which came just one day before he turned three. And even though I knew the diagnosis was coming
and knew that I wanted to start ABA treatment and I knew that I needed a diagnosis to start
ABA treatment, even though all of that was in play, I was, it was still a very devastating
day. And I describe it as one of the worst days
of my life. I was extremely stressed that day and for
weeks and months to come, um, because I really didn’t know how to get things up and running. And I was worried that I was losing time. 20 years later, I’m not only a mom to Lucas
and Spencer, my typically developing son who’s just 18 months younger than Lucas, I also
am a behavior analyst, I wrote a bestselling book called The Verbal Behavior Approach,
earned a phd, I’m an online course creator, I started a podcast in January. So I’m like 20 years deeply ingrained in the
autism world. So I not only have my experiences with Lucas
20 years later, but also with hundreds of clients directly and thousands of parents
and professionals around the world that I’ve helped. So I thought I might look back and give myself
five pieces of advice that I didn’t know back then cause I knew very little about autism. So I’m hoping that this would help you possibly
or someone that you know that you can send them to this video. First piece of advice is it’s not your fault. Um, even if you were in denial like I was
for over a year, I was in deep state of denial when my husband first mentioned the possibility
of autism. I even one of my very first video blogs back
in 2017 was on denial and how denial really does hurt the child’s chances of progressing
and reaching his or her fullest potential. So even though I was in denial, it’s not like
I had Lucas locked in a closet for three years. I was getting speech therapy, he was going
to typical preschool. I was trying to engage with him. I was trying to teach them to talk. I was trying to teach them to imitate. I was not really trying to potty train at
that point, but you know, I was trying to be not only a great parent, but I was also
trying to get Lucas what I thought he needed. But it wasn’t enough because I did need the
diagnosis of autism and I needed to start intensive ABA, but I didn’t know that. So, um, I didn’t know that waiting and, and
watching and worrying were just delaying the treatment that Lucas needed and were hurting
his chance of recovering from autism, which I had no idea was possible. Which leads me into advice number two I would
tell myself, because once I found out about a month or two before Lucas was diagnosed,
I found out about a book called, let me hear your voice, which explained how this author,
Catherine Maurice, recovered her two kids with autism using an ABA approach. When I went in for the diagnosis and really
when Lucas got the diagnosis and we started ABA therapy, I was really hyper focused on
recovery. And even in my book in Chapter 12 I talk about
how I really felt like there would be a day when we would have a recovery party that that
it was a very black and white thing. And I would go back and tell myself that recovery
from autism is not usually a black and white issue. And while Lucas benefited greatly from ABA,
I can’t even imagine what our lives would be like if I wouldn’t have found ABA initially. While he read it. He benefited. He is, didn’t come close to recovering. He’s, he’s still very impaired. He just turned 23 but he is happy, he is safe
and he is as independent as he possibly can be. So he didn’t come close to recovery. But even in my clients who did recover, they
don’t know that they had autism. Some of them are going to college and learning
to drive and these kids, it’s not like they um, don’t have other issues. They might have lingering issues like learning
disabilities. A few of them have anxiety disorders, some
of them have depression. Um some little kids that no longer have a
diagnosis of autism, have articulation problems that they still struggle with or executive
functioning issues. But many typically developing kids also have
lots of issues too. And in the end, I learned over the years that
there is no such thing as Joe normal. And my goal now is to help each child reach
his or her fullest potential to be as safe, as independent and as happy as possible. So, um, advice number two is, you know, it’s
fine to focus on recovery, but it’s usually doesn’t work in that there’s not a day or
there’s not a year when everything unfolds and then your life is normal. There is no such thing as truly normal. And that is something I’ve, it’s taken me
two decades to learn, but I’ve learned it and I would tell my old self that. Number three, it’s going to be a marathon,
not a sprint. And it’s actually going to be more like a
marathon on a roller coaster. Um, there’s going to be twists and turns. There’s going to be, sometimes you feel like
everything’s going great, then you have setbacks and so it’s a very turbulent situation and
buckle up because it’s not going to be a smooth ride. Number four, teaching and advocating for your
children. Even if my typically developing son a Spencer
and Lucas teaching and advocating for your children never ends and you’ll need to spend
your whole life learning how to be a better teacher and advocate for your kids. This in the end will make you a better person. Um, but it is going to always be, there’s
not like a clear cut, oh there, they’re fine now because then it’s the next level. It’s, they’re going to college now. They still have executive functioning issues
or, or they’re graduating from high school and they’re going to this placement and they’ll
need a shadow and there’s just always another thing. But even for typically developing kids, there’s
lots of my son Spencer going to college and there’s new challenges and new issues you
just have to put, keep putting one foot in front of your other to be your children’s
best teacher and advocate. And finally I would tell myself that autism
is not going to ruin your life. It did. I thought maybe it would. I thought maybe when he got the diagnosis
of autism, the curtain would fall. My life would just be horrendous. Um, and if I could snap my fingers and make
autism go away for Lucas and me and for all the families that I know and work with, I
would do it in a second. But autism is not going to go away with a
snap of the fingers and it’s also not going to ruin our lives. It’s not going to ruin my life. I have found my whole purpose in life and
that is to help Lucas achieve his goals, help Spencer help myself. Um, Lucas will continue to make progress and
I’ll continue to help keep the bar high for him and I’ll continue to make new goals
and set my sights on higher goals to help millions more. So I hope you enjoyed these five pieces of
advice. If you are struggling with a new diagnosis
or if you are years into it and still struggling, um, I hope my insights from the last 20 years
might, might help you think about things a little bit differently. So if you enjoyed this video, please share
it with others, leave me a comment, give me a thumbs up. If you would like to learn more and join me
on my mission to turn autism around for millions, I would love it if you would go to marybarbera.com/join
to sign up for a free guide and I will see you here next week.

12 comments / Add your comment below

  1. I’m in tears watching this, my daughter is 24 months old and a mother just knows…thank you for your videos.

  2. My son just turned 3 and he got his autism diagnosis in December and my 4 and a half year old daughter got her diagnosis in May. I am so happy to have found you and your insight. It’s been a difficult ride so far but I’m trying hard not to lose hope.

  3. Whenever I watched your video i feel so depressed cause it’s like you are a reality that I am trying to run away from but it keeps me in my toes and wakes me up on what i have to go through and what i have to do. ?

  4. Yes, turned my sons minor autism around. You would not know there had been a "fight". Smart cookie. Key, catching it early?

  5. Happy birthday dear lucas.
    Thanks a lot mam and salute to your courage. Really its a roller coaster marathon ☹️. Love n respect for you mam

  6. my youngest son ASD from Cebu City Philippines last week Dev. Ped. diagnose my son ASD turning 3 years old this july 18.2019 it's hard for me being a father knowing your baby diagnosed with ASD i can never imagine but luckyly i've have strong and brave wife there's no time for grief but to accept ezekiel's condition. i pray that god give us more strenght and grace,wisdom and prosperity .

  7. We took our.son to speech treapy yesterday and i ask her of we should took him to AbA and she said it is very complax and not nessecray but it is all up to you so basically she didnt give me a good feedback about it and now i am confuese

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