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5 Pieces of Autism Advice After 20 Years from Diagnosis Day

Dr. Mary Barbera

July 2nd, 1999 was Lucas’s diagnosis day. This was one day before his third birthday, so it’s easy to remember. Lucas just turned 23 this week, so I thought I would do a video blog this week looking back on the autism advice I would give myself way back 2 decades ago. Hopefully, this might help other moms, parents, and grandparents whose children are just getting diagnosed and feeling the way I felt 20 years ago.

Each week I provide you with some of my 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. Turning 23 is not a typical milestone that we would necessarily have a big, full-out celebration for like reaching 18 or 21 for instance.

But it does mark 20 years since Lucas was diagnosed with autism, which came just one day before he turned 3. And even though I knew the diagnosis was coming, I knew that I wanted to start ABA treatment, and I knew that I needed a diagnosis to start ABA treatment, it was still a very devastating day. 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, because I really didn’t know how to get things up and running. 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 also wrote a bestselling book called The Verbal Behavior Approach, earned a PH. D, I’m an online course creator,  and I started an autism podcast in January. So I’m like 20 years deeply ingrained in the autism world. 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 5 pieces of autism advice that I didn’t know back then when I knew very little about autism.

My first piece of autism advice is, it’s not your fault even if you were in denial like I was for over a year. I was in a deep state of denial when my husband first mentioned the possibility of autism. One of my very first video blogs back in 2017 was on autism 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 3 years. I was getting him speech therapy, he was going to a typical preschool, I was trying to engage with him, I was trying to teach them to talk, and I was trying to teach them to imitate. 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. I didn’t know that waiting and watching, and worrying was just delaying the treatment that Lucas needed and was hurting his chance of recovering from autism, which I had no idea was possible.

This leads me to my second piece of autism advice that I would tell myself. 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. 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 and that it was a very black and white thing. I would go back and tell myself that recovery from autism is not usually a black and white issue. 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 benefited, he didn’t come close to recovering. 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.

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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 don’t have other issues. They might have lingering issues like learning disabilities, a few of them have anxiety disorders, and some of them have depression. 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. My goal now is to help each child reach his or her fullest potential and to be as safe, as independent and as happy as possible. So advice number two is it’s fine to focus on recovery, but it 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. That is something that it’s taken me two decades to learn, but I’ve learned it and I would tell my old self that.
The next piece of autism advice is, it’s going to be a marathon, not a sprint. It’s actually going to be more like a marathon on a roller coaster. There are going to be twists and turns. Sometimes you feel like everything’s going great, then you have setbacks and it’s a very turbulent situation so buckle up because it’s not going to be a smooth ride.
Autism advice number four is teaching and advocating for your children. Even for my typically developing son, 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. There’s not a clear cut, he’s fine now, I can stop, because then it’s the next level. They’re going to college now, they still have executive functioning issues or they’re graduating from high school and they’re going to this placement and they’ll need a shadow.  There’s just always another thing. But even for typically developing kids, there’s always something new. My son Spencer is going to college and there’s new challenges and new issues so you just have to keep putting one foot in front of the other to be your children’s best teacher and advocate.
Finally, I would tell myself that autism is not going to ruin your life. 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. 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, to help Spencer, and to help myself. 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.

I hope you enjoyed these five pieces of autism advice. If you are struggling with a new diagnosis or if you are years into it and still struggling I hope my insights from the last 20 years might help you think about things a little bit differently. So if you enjoyed this video/article, please share it with others, leave me a comment, and 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 right here next week.

Free Workshop to Learn to Turn Autism (or Signs of Autism) Around

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