Turn Autism Around, Online Autism Assessment: Try It Now!

Transcript for Podcast Episode: 197
Turn Autism Around, Online Autism Assessment: Try It Now!
Hosted by: Dr. Mary Barbera

Mary: You're listening to the Turn Autism Around podcast. And I'm your host, Dr. Mary Barbera. I am so thrilled to bring you this episode. It is about my software initiative that I have been working on for over six months now, working with a software company to take my one page assessment and my work over the years and really put it into an easy software that parents and professionals can use and get very quantifiable results. And I really do think that it's going to make a huge difference in the lives of parents and professionals who take it. Right now, the assessment is free for the first 1000 people, at least at MaryBarbera.com/freeassessment. But why don't you listen to this episode? Because I talk a lot about why and how and how it really might change the way autism is detected and treated. And even if you don't think it's autism. This episode is for you because it really doesn't matter whether or not you have a diagnosis or not. These strategies work, and this assessment is the key to finding your starting point. So let's get to it.

Narrator: Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed, and lead happier lives. And now your host, autism mom, behavior analyst, and bestselling author Dr. Mary Barbera.

Introducing Mary Barbera’s New Free Autism Assessment Tool:

Mary: Well, welcome back to this very special episode. I am producing podcasts every single week for you. Every single Tuesday, a podcast has come out, which is thanks to my team. I couldn't have done it without them. So I record these podcasts and then I hand it off to my team, and then my team hands it off to another outside agency called PodFixer. And David and his team have been working with me since the very beginning to get this all in shape, and I'm very happy with their services. So let's get to what this assessment's all about. Does it assess for autism? What does it assess? Why did I do it? Let's just start at the beginning. For those of you that know me, which is most of you. And just to refresh for anybody that's new, here I am an RN and I became a mom to two boys back to back 18 months apart. Lucas was born in 96. Spencer was born in 1997. Then Lucas started showing delays and differences that regressed a little bit and then was eventually diagnosed with autism, moderate to severe autism. One day before his third birthday started, ABA treatment became a board certified behavior analyst, wrote two books, created online courses, this podcast, etc., etc. So I have been in the autism world for over 23 years now, and if you count the time when Lucas was having delays, it's almost 25 years. So I feel like things have changed in the autism world in the past 25 years, but in actuality, it hasn't really gotten much better. There is definitely less stigma. The rate of autism has skyrocketed from one in 500 to about one in 44. There is more treatment with ABA. There's also the Internet and lots of different theories and lots of different perspectives on what should be done, whether you should diagnose, whether you should treat, whether autism is a gift. I don't feel like the urgency for supportive parents has improved. I don't feel like we are supporting early intervention professionals enough who are seeing signs of autism and they're not allowed to talk about autism. And in multidisciplinary teams with early intervention professionals for the evaluation, there's no behavioral person on board, almost never a behavioral person on board. So very well-meaning early intervention professionals are sometimes just kind of shooting from the hip in terms of coordinating everything, especially when you're seeing problem behaviors or significant signs of autism. In actuality, it doesn't matter if a child is diagnosed with autism, they tend to have very similar delays and differences, no matter if it's autism or ADHD or significant speech impairment, receptive delays, expressive delays, sensory processing issues. And then we throw COVID into the mix over the last couple of years and a lot of isolation and not going to daycare, preschools, library time. That certainly hasn't gotten easier for parents or professionals. There are also because of the increase of autism, there are waiting lists that are oftentimes taking parents up to two years to get a diagnosis, even if they know their child is showing signs. And those two years are very, very critical. It's taking years. You know, that's if everybody is on board, it still takes years to get diagnosed in some cases. But it's also taking years to notice there's a diagnosis, like most signs of autism do show up by 18 months. They definitely start by three. They should have been showing signs of autism. Yet years go by. Literally, the average diagnosed age is four and a half or five, and that really has not changed much in recent years. So overall, I feel like we're wasting precious time not helping parents and are not helping professionals, and we're not treating developmental delays with the same proven science that we know works for early autism. And as a RN and a behavior analyst with a doctorate and as a previous early intervention professional, I know that my four step turn autism around approach with my latest book outlining the whole thing I to go cause I know this approach works not just for kids with autism, but kids for developmental delays, too. I have success stories, testimonials, a white paper which we can link in the show notes right here in MaryBarbera.com/197. I know worse researchers are working very hard to try to figure out who benefits from which kind of therapies and research is slow and it tends to focus really far down. Like I have a published article in a peer reviewed journal in the Journal of the Verbal Behavior Analysis with Dr. Rick Kabina, now, who's been on a previous podcast. We can link both the paper and Dr. Kabina's podcast interview on the show notes, and that was called Using Transfer Procedures to Teach Tacts to a Child with Autism. And what we did was we had Lucas as our subject, one child, and we had things he didn't know, pictures he didn't know. And we taught him. And then we measured it with a multiple baseline study. But what's happening now is as I move to the world of online education, online courses, podcasts, my book, even my video blogs, my approach is treating everything at the same time. I'm trying to help the parents and professionals, increase talking, decrease tantrums, improve eating, improve sleeping potty training, going to the doctors, dentists, and haircuts without a fuss. So it's hard to do big studies on kids that are changing in multiple areas with online training. And so there are currently, as far as I know, there are no research tools that currently do what I think needs to be done to really measure how well kids are doing in early intervention settings, in ABA clinics, ABA at home, whether they have a diagnosis or not. These kids, we need to measure not just the measuring her area or the speech therapists measuring their area. We need a tool like I created. I believe I created something close to what I've been searching for, to assess the whole picture, have the parents be able to fill it out quickly and easily and have the ability to compare pre and post test results? I have spent almost half of my life trying to come up with a solution, and now I'll spend the rest of my life coming up and working towards this plan. I'm not saying that the assessment that I'm going to talk about now is perfect by any stretch of the imagination, but I feel like we have to do something. And I invested a lot of time and financial resources over the past six months to get it closer and to be able to offer it for free right now for all of you here. So here's my exciting news. Right now you can go to MaryBarbera.com/Freeassessment. What happens when you get there is you need about 10 to 15 minutes. And what this assessment covers, is it doesn't cover whether your child has autism or not or how quote unquote high functioning you are. Because that's a loaded question. I did a podcast very early on. I think it was podcast number four. We can link in the show notes about high functioning versus low functioning. Basically what I did was I took an assessment that I created more than 15 years ago. It's actually started to be created with my first book, The Verbal Behavioral Approach, in the back of that book. There is a five page assessment that we then combine to one page. Then over the years, I've made so many revisions to it. It is on page 49 of my Turn Autism Around book. It's in the free book resources we can link in the show notes. It's a one page assessment that covers. Whether the child, what age the child is, who's filling out the survey, if they have a diagnosis, if they get services, if they have any medications, if they have any allergies, then we go into safety awareness, eating, sleeping, potty training, grooming, dressing, speaking. Both expressive language as well as following directions or receptive language on this one page form is also an assessment of imitation and matching social and play concerns. And then a big area of focus is also on problem behaviors. So it took me many, many years to get this one page assessment going. But the problem with the one page assessment is in many areas here, it's not quantifiable. It just lists all your child's problem behaviors and tells us how often it happens ten times a day versus 100 times a month. Does your child have any sleeping issues? If yes, describe them here. So. It might be. It is helpful to have something, but it's not quantifiable or it wasn't quantifiable until right now, until we moved its software and we made it quantifiable and scorable.

Why is Assessment So Important?

Mary: So why is assessment so important? No matter what the problem is in your life? We evaluate things like if we have a plumbing problem or a car problem or we feel a lump in our breast when we're in the shower, any problem we have is not autism related, not developmental delay related. We have to start with assessment. We have to start out by finding out what the problem or problems are. So with autism or signs of autism, we need to look at the whole picture. We can't just have one professional look at one part. We can't just focus or just assess sleeping or potty training or eating or even talking or problem behaviors. We need to look at the whole picture. But the problem with looking at the whole picture is. That's usually the role of a behavior analyst, although many of you listening, you know, that are behavior analysts in many cases, because I was in schools and homes for over a decade, you're sometimes pigeonholed into, hey, you stay out of language. You're here for problem behavior. And I've been told that. So we need an assessment to quickly and accurately help us figure out exactly what the situation is at the moment. Give a snapshot and then we need to turn it into a plan, which is step two of the chart autism around approach. You know, I've done podcasts about assessment and planning. My whole courses are based on this. But we need to start with that assessment. That's easy, quantifiable, accurate, as accurate as possible. That will really help parents and professionals figure out their starting point in all of those areas. So there, like I said, are no assessments that I know of that are like this. Even the VB-mapp by Dr. Mark Sundberg. We can link his podcast interview in the show notes. I love the VB-mapp and a lot of my, you know, one page assessment of, you know, 15, 17 years ago when I created it was based loosely on the ABLED, on what I would do when I looked at kids, not just as a behavior analyst, but also as a registered nurse, also as a mom. Because I know it's not all about language, it's not even all about problem behaviors. It's about everything. And if I get a question from a parent or a professional about potty training, you know, four year olds are not potty trained. Yeah. That's okay. That's a little late. I'll give it to you. But if they're not talking or they're having severe problem behaviors or they're not sitting to learn, then that stuff needs to come first before we focus too much on potty training. Because I have all of these hats I wear, I feel like I have always been looking back and thinking, how could I make this make sense? So another couple of problems with the one page assessment is that with paper and pencil and the same thing with the ables and the VB-mapp over the years, I mean, they did move to software and you can get pre and post for the Beebe map, at least you can get pre and post scores. And all of this is so important. But my one page assessment was either paper and pencil or a PDF fillable, but there was no way for me to get any data either to see what was working, what wasn't working, what programs or mini courses I need to create to help people. Because if you've got a child not sleeping through the night, not potty trained, a very picky eater, not talking, having severe tantrums, not imitating, not matching. Okay. So where do you start? And that's where I think it is a gift of mine to be able to step back and look at the whole picture. So we need to help individual kids and their parents and professionals by having the one page assessment now that is on software. Be quantifiable. You actually get when you do the assessment, it's ten steps over 10 minutes. It's not a quick little quiz. It's not a quick fix.

What Does This New Assessment Include?

Mary: It is a very comprehensive assessment that you can do very quickly. And what the software gives you is it gives you scores in three areas, self-care and daily activities. That would be eating, sleeping, potty training, grooming, dressing, those sorts of things. It gives you a score out of 100%. So a score of 10% is a child that has a lot more delays in self-care and daily activities than a child who scores 60% or 90%. The other second category that it gives you a score for is language and learning skills. And again, scoring a 5% is worse than scoring it 50% or 85%. And then problem behavior, minor and major problem behavior. If you have severe problem behavior, you will score on the low end. Now, I know this is confusing and we want language and learning and self-care to go up. We want problem behaviors to go down. So where do we make the scoring? So we worked with the software company to make all the scoring worse low. And then when we do a repeat of the assessment months later, you should see those scores go up. If the intervention you're using is working, I eventually see this and then you also get an overall score for your child or client. But I do want to warn you, these scores are at the very beginning stages. That's one of the reasons that I am offering this assessment for free, at least for the first thousand people who complete it, because you will get scores, you will get the whole PDF you can save and or print out based on what your answers were. You'll be able to take that assessment and make it into a plan and figure out your starting point with either the free resources or by joining my online course and community. But the data will also help us, me and my team to try to figure out okay, kids with signs of autism who are two that complete the survey. Their parents are 75% just saying that might be a statistic out of the kids that aren't are not diagnosed but have signs of autism who do not speak at 2, 75% of them have picky eating, for instance, might be a problem, or 64% of them might have sleep problems. And this kind of data will be really helpful not only for people and researchers who follow the Turn Autism Around approach, but for professionals and researchers. We've had several researchers on this podcast that are all doing research and I want to add, I have a Ph.D. I am very interested in researching and trying to improve the lives of children with autism forever around the world. So this assessment, it's in its beginning stages. The scoring is not valid. It's for informational purposes only. It's a very fluid process. But we're going to take the feedback we get. We're going to adjust the scoring. I just did the assessment for Lucas, who's 26 years old. I mean, it's mostly for young, young children with signs of autism or with a diagnosis. But you can do it at any age because you know what? Lucas still is scoring at around 65, 70% overall. He still struggles with some self care and he needs supervision and support. He still is not conversational. So his scores on language are not as, you know, they're not perfect because he's not conversational and he still has occasional major problem behaviors. So his score and problem behaviors is, you know, overall, he's in the 60 to 70% range. But I did notice some issues with some of the statements under the scoring, you know, so I am offering this to you as a free assessment, almost as a beta tester, although we just got done our true beta testing with our members just a couple of weeks ago, so I wouldn't get upset about scores by the end. If you see something really off or you see typos or you want more input to add, more input to help us make the tool better, you can always email us at [email protected].

Try The New Autism Assessment Quiz Free:

Mary: So let me just summarize you just for the first thousand beta testers will make the assessment for free at MaryBarbera.com/freeassessment. All you'll need is a computer or a tablet or even a phone. It will be about 10 minutes. Maybe 15. It will be ten steps. It's only in English at this point. And your results will include the three scores, the self care, the language and the problem behaviors. Individually, the assessment software works to identify the strengths and needs of the child. I did, like I said, do some podcast episodes. I'm making a plan so maybe we can link that one in the show notes to it because you can literally take your assessment, go down the left hand column, say, okay, safety awareness is a problem. I'm going to put that as a need on the planning form. Oh, he's eating fine, eating well, no problems, uses utensils, feeding is a strength and you can take it from there. So making sure that individuals are assessed and then the plans match and the goals match and that will be a big... I mean, there's a lot of value in that even if you're like sitting around thinking, Mary, I have reams of assessments. I have all of these documents where, you know, from six months ago or from a year ago or from last week, and you're telling me to spend another 10 minutes like, I don't know if we need another assessment. Trust me, this is an assessment like no other. It will literally take 10 minutes. You can make sure that you're not focusing on the wrong things. So we're not quite ready for a pre and post, you know, dashboard or anything like that. And those kinds of upgrades and next phases of the assessment will probably cost some money or be limited to members of my online course and community because as you can imagine, this software investment is not small, but for the first assessment, you definitely can get in now and get it for free. But I do hope to have pre and post abilities. We have member IDs so we can blind the child's first name and birthday and you will get a PDF with your results via email. So I just want to wrap it up and just say a few more things. I know that my four step approach works for many, many children with autism or signs of autism. My whole approach is outlined in my book Turn Autism Around. I've done many, many podcast episodes. You're listening to this one. I have episodes on assessment, episodes on planning, episodes on table time, all kinds of things that you can learn. I do think that joining the online course and community where we work on self-care, language and problem behaviors all at the same time is the best path forward. But I know for some of you that's just not an option right now. So I am still on my mission to provide free information every single week via this podcast. I'm also all over on social media. If you're on Instagram, TikTok, look me up. I am there. So I do have visions for a research arm of my company. I have visions to really make a difference in this world for kids with autism and to change the way autism is detected and treated around the world forever. I don't think there's much difference between how you would treat someone with a speech delay or excessive tantrums or sensory processing issues than you would treat a child with signs of autism. I've seen all of those signs and those diagnoses within my course and fact in the toddler community, half the members that do introduce themselves state that they do not have a diagnosis for their child yet, and they are really making major, major strides. I did recently, a few months ago publish an article, actually, it was in February and this article it's a white paper, MaryBarbera.com/whitepaper. And that was one of the factors that led me to think I have to get the software done because in that situation it was Michelle Sie and she joined my course during COVID. Her daughter had two words at one hour and 33 days later she had 500 words in one hour, no she had 180 words in one hour. She had 500 words total by that point, only 33 days later, only with my course, not with any other professional intervention, even over Zoom, because the world had shut down. And I was trying hard to get that paper published because it was I did have some data and I did have I thought I had pretty strong support, but I could not get it published. So Dr. Rick Kabina and I published it as a white paper will link it in the show notes here. But you know, I can't waste another decade of just testimonials and success stories. And we have to make sure that the interventions, whatever they are that children are receiving, are worth the time and are worth the money and are worth the the investment that society is making. And we have to help these kids reach their fullest potential. I think this assessment, even though we're at the very beginning stages, will do just that and really change things and change the lives of children in the future. So if you want to be among the first 1000 or more beta testers and take the assessment for free today, just get ten or 15 minutes together and go to MaryBarbera.com/Freeassessment is probably best if you do it, if you're a professional to do it with a parent. So you have all the the details, but you won't need any you won't need to test the child. It's just based off of what you know, the child can or cannot do. So I hope you love it. If you do, I would love to see you spread the word. You could tell your friends, tell your neighbors. Post it all over social media. MaryBarbera.com/freeassessment and do it now because you know, as we get data, we may change the situation and we may move forward, build dashboards and really make some big moves in the research world of autism. So I'm going to leave you with that. Thanks so much for spending this time. Listening may go on and on. As you can tell, it's an issue near and dear to my heart to get the software out into the world. So I hope you love it. Please go to MaryBarbera.com/freeassessment. And if you have any input or questions you can always email us at [email protected]. Thanks so much and I'll see you next week.

Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.