Understanding Early Diagnosis and the Road Ahead
When I sat down with Diana Danu from Bucharest Romania, I knew this was going to be a special conversation. Gabi is Diana’s son who’s eight years old and has autism.
Diana told me Gabi got diagnosed around three, which she said was actually pretty late even for Romania. And man, did her story sound familiar. Their pediatrician kept telling them “he’s a boy” and that kids develop at different rates. Just wait and see, right? I remember when our son was one and the doctor told us he was deaf because he wasn’t responding to things. We knew that wasn’t it, but getting the right answer took forever.
Key Points:
- Don’t panic: Take thoughtful steps after diagnosis.
- Engagement matters: Kids need active learning, not just presence.
- Consistency counts: Align family, therapists, and teachers.
- Seek guidance: Learn from experienced parents and mentors.
The Reality of Autism Services in Romania
Here’s something that really surprised me – Romania doesn’t even have a national registry for people with autism. Think about that for a second. The NGOs doing the work estimate somewhere between 40,000 and 100,000 people with autism in the country, but nobody really knows. And get this, about 25% of school-age kids with autism diagnoses don’t even go to school.
When I asked Diana why, she explained it’s basically a perfect storm of problems. Not enough services, not enough professionals who can diagnose early and families are pretty much left to figure everything out themselves. There’s no support system like what we have in the States.
The Panic and Urgency After Diagnosis
Diana really nailed something that I think every autism parent gets – that gut-punch panic right after you hear the diagnosis. She said they went into “full power mode,” which is exactly what we did. Research everything, get on every waiting list, find any therapist who’ll see your kid. You just want to DO something or anything.
But here’s where they made what Diana calls their biggest mistake: They put Gabi in a small preschool thinking he’d pick things up from the other kids. Hearing more language, seeing how they behave, all that. Sounds logical, except it didn’t work at all. As she put it, “he was just there attending and not absorbing and not flourishing and not progressing at all.”
That’s such an important lesson, just being there isn’t the same as actually learning. They lost three months before getting him into proper ABA therapy.
The Problem with Passive Therapy
Gabi would go to kindergarten in the morning, then ABA classes in the afternoon. The feedback Diana got was basically useless. “Not his best day for puzzle time” or “he did pretty well in program X.” That’s it.
The therapy center gave them some parent training and a bunch of PDFs full of technical jargon. Diana said she read them and had no clue what they meant. They weren’t written for parents; they were written for other professionals.
This went on for almost two years with basically no real progress. And here’s the kicker – the therapists weren’t even actual BCBAs. They had psychology degrees but no specific training for working with special needs kids. In Romania, parents have to put together their own team without any guidance.
The Turning Point: Parental Involvement
Diana’s big wake-up call came during one of those monthly coordination sessions. She realized Gabi could do all these things on command during therapy, but absolutely none of it carried over to real life. Not even the simple everyday stuff. After two years, he was basically the same kid at home he’d been when they started.
That’s when she really started digging and more importantly, talking to other moms. She told me something I completely agree with. Yes, online research is great but talking to another mom who’s been through it? That’s where the real help is.
She met another mom at a park who recommended a different center and that made a huge difference. More parent involvement, more social interaction with other kids, less isolated one-on-one therapy and more fun outdoor stuff. You could actually see the change.
The Importance of Ecosystem Integration
Not all BCBAs are created equal. The really good ones get that they need to work with your whole world. Family, relatives, other therapists, school staff and everybody.
Diana said, “grandparents will be grandparents in any part of the world.” They want to give the kids whatever they want, right? They’ll sneak them treats, skip the “work first, reward later” stuff we’re trying to teach.
But here’s what’s different. When grandparents visit Gabi at home they have to look at the whiteboard where they list Gabi’s current programs. The grandparents actually ask, “How do we do this? How do we do that?” Getting everyone on the same page makes such a difference.
Avoiding Isolation and Promoting Socialization
Diana shared this heartbreaking moment: The kindergarten class had an event and took video of the whole classroom. While all the other kids were playing and roughhousing, Gabi was sitting alone in a corner with a toy from home. Just sitting there, not engaged with anything or anyone.
The teachers knew he had autism. They knew he was isolated. But because he wasn’t causing problems, they just left him alone. Their daily reports were always “he was okay, he ate a little bit, he looked around.” That’s not teaching, that’s babysitting.
I shared my own horror story with Diana. One day my wife Kay walked into our son’s classroom and found him strapped to a wedge with Velcro restraints on his hands. The school said they couldn’t manage his behavior. We were absolutely furious. You remove a kid from an overwhelming situation, you let them calm down, but you don’t just give up and strap them down like that.
Building the Right Team
Diana’s got a pretty good setup now. Gabi has two therapists who work with him from eight to five. One goes to school with him. They meet with their BCBA every week to talk about what’s working and what’s not, both at home and at school.
Gabi goes to a regular public school where the principal and teachers actually get it, though like here in the States, the special ed teachers are drowning in caseload. The big difference now for Gabi is that everything’s integrated: school, home, piano lessons, swimming lessons.
When Gabi’s swimming instructor came to Diana because he just wanted to splash around instead of learning to swim, she talked to the BCBA. The BCBA gave some suggestions, and the instructor came back amazed. “It works! He gets ‘do this first, then we play.'” Simple structure, applied everywhere.
Finding a Mentor Makes All the Difference
One of the most pivotal moments for Diana was finding a mentor. His name is Damian Nedescu, and his son was diagnosed almost 20 years ago. The son’s now a college graduate doing great. Damian’s family was one of the first in Romania to bring in a BCBA from the UK.
Working with Damian, even without having a BCBA around all the time, Diana’s family saw incredible results. Better eye contact, joint attention, socialization – all the things they’d been struggling with. Having someone who’d been through it and come out the other side gave them the roadmap and the confidence to make changes.
Key Takeaways for Autism Parents
Talking with Diana reminded me of a few things I’ve learned the hard way:
First: try not to panic after the diagnosis. I know, easier said than done. But that panic can push you into bad decisions.
Second: just showing up isn’t enough. Your kid needs to be actively learning and engaged, not just present in a room.
Third: don’t settle for therapists or teachers who aren’t getting results. Find BCBAs who understand that therapy needs to happen everywhere, not just in a clinic.
Fourth: talk to other parents. Find the ones who’ve been doing this longer than you. Their stories and solutions are worth more than a stack of research papers.
And finally, everyone needs to be on the same page. Grandparents, siblings, teachers, therapists and everybody using the same approach. Yeah, that means some awkward conversations with well-meaning relatives who think you’re being too strict or weird about things.
Diana’s story proves that whether you’re dealing with this in Romania or right here in the States, the basics are the same. Good therapy, parent involvement, consistency and not accepting “good enough” when your kid deserves better. We’re both still figuring this out as we go, but sharing what we’ve learned helps all of us get a little further down the road.
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Transcription:
Mike Carr (00:06):
Well, hello everyone again to the next episode of Autism Labs. We have something truly special Today. We’re talking to a mom from Bucharest, Romania, all the way across the pond, and she’s got an incredible story about her young son. I believe Gabi’s eight years old. Is that correct, Diana? Okay.
Diana Danu (00:23):
Yes, Mike.
Mike Carr (00:24):
So go ahead and introduce yourself and tell us a little bit about Gabi.
Diana Danu (00:27):
My name is Diana Danu. I am the mother of an 8-year-old boy with autism. His name is Gabi. Gabi is a wonderful little boy who has been diagnosed when he was around three years old. And today I’d like to first of all thank you for the opportunity to share a story and discuss some of the lessons that we’ve learned along the way. Some of them were learned the hard way, and hopefully lessons that I can share and the navigation pathways that we found will resonate with some of the families that are listening to your podcast today.
Mike Carr (00:58):
Great. So tell us a little bit about Romania and what it’s like to have an autistic kiddo over there versus in the us. I know you spent a little bit of time in the US, but I’m sure it’s very different over there. So give us a little bit of a background, if you would.
Diana Danu (01:11):
Well, when we first received the diagnosis, obviously it was a shock to any parent who gets to hear those words out of doctor’s mouth in an office. So we started looking around and researching, and we found out that in Romania, there is no national registry for autistic persons. The NGOs who are working really hard in this domain have their own statistics, but even they contradict themselves because, for example, in one report that was issued last year, the data showed that they estimated around 40,000 kids and young adults with autism. Yet around 25% of those kids that are of school age and have a diagnosis do not attend school. And then there are other statistics that say that around 100,000 artists exist or live in Romania. Obviously not all of them are accounted for and are being provided the services that they need. So this was the system that my family entered when Gabi received his diagnosis.
Mike Carr (02:09):
Wow. So why 25%? Why such a high number? Do you think of autistic kiddos aren’t even in school? Is it because of the lack of support or what’s going on there?
Diana Danu (02:19):
I think it’s a combination. It’s a combination of lack of support, lack of services, lack of professionals to diagnose early, even for Eastern European standards like we had in Gabi’s case, he was diagnosed rather late around, he was around three when he was diagnosed. Before that, we received some suggestions that some issues might be there, we should look into it. But then other times even our pediatrician said, well, he’s a boy. Maybe they develop in different stages and let’s see how things come along. And by three, we pretty much came to the conclusion ourselves and it was reconfirmed, but obviously we went to very many doctors.
Mike Carr (02:59):
Yeah, I mean, I can remember when our son was like one, and we took him in and one of the doctors said, well, he is deaf. And we knew he wasn’t deaf, but he wasn’t responding to a lot of the normal stimuli that a one-year-old would respond to. And so the doctor just assumed, well, I can’t hear very well, or he is deaf, and that’s a solvable problem. It’s not great. So tell us a little bit about how you started your journey and what you did right off the bat once you got that diagnosis.
Diana Danu (03:24):
Well, to add a little bit to your story about deafness, as parents, we were confused ourselves because many of the milestones that Gabi had to have by a certain age, he did have them. I mean, he was responding, he was making eye contact, he had a little bit of vocabulary and so on and so forth. And as that slope rises up at some point it just starts going down and that’s when the signs are too many to ignore. Right after the diagnosis, we went into full power mode. So we started researching and we got him onto a waiting list for a bigger center, a BA therapy center. And so that we wouldn’t stay idle because we couldn’t bear the thought we got him into, I wouldn’t call a makeshift, but it was therapist who offered to work with him while we waited for the more formal center.
(04:11):
And we also made our biggest mistake at the time, there were others along the way, but I think that was the biggest one. We assumed that he would flourish in a kindergarten or in a preschool because he might be around more kids, he might hear more speech, he might get to mimic some of the behaviors and so on and so forth. So we put the horse before the cart and he went to a small preschool with not a lot of kids in his class, but obviously without the foundation that we now know should have been there. It was just presence. He was just there attending and not absorbing and not flourishing and not progressing at all. So after three months, the center where we had told him initially had an opening and he started more formal a b, a therapy.
Mike Carr (04:59):
Yeah. I think one of the problems, one of the challenges that any new mom or new dad’s got is as soon as you hear the diagnosis and you’re not familiar with autism, or maybe you are and it’s only scary stories, there’s a sense of urgency and panic, I would say that I certainly panicked. And so you get into, well, let’s find out everything we can and let’s action, action, action. And if you find something that seems to work, that’s sort of the default choice because everything that you’ve heard and everything that even we heard was, well, if he’s autistic, you want to get him into therapy right away. So what were some of the experiences that you had going down that path?
Diana Danu (05:36):
When I look back, I think that I should have known better, but I didn’t thought that we by doing anything, really anything to help him. We were doing at least something. We weren’t just waiting for things to happen. So we would basically have him in kindergarten, in preschool during the first hours of the day, and then in the afternoon we’d take him to a classes and at the time, the feedback that we would receive after classes would be something along the lines of not his best day for puzzle time, or he did pretty well in program X or Z, thank we were so thank you and great, well, hope he does better at puzzle time tomorrow, anything that helps move the needle along. So he kept attending those A classes. We kept getting the little feedback that we were receiving at the time. And I can’t say that the therapy center wasn’t involved. They did organize a few training sessions for us as parents where some of the basic A principles were explained to us, and we were also given some PDFs with a lot of terminology. I’ll be completely honest with you, Mike, I read them and got lost because they were not written for parents and we tried to do things as we would normally do, play with him, try to engage him, try to much cooperation from him as possible. And almost two years went by.
Mike Carr (06:53):
Yeah, I think one of the challenges is not wanting to intervene or interfere with what’s going on in school and trusting the therapist or the BCBAs or whomever is working with your child and making assumptions that, well, they know what they’re on and I should rely upon them. And what I think you’ve learned, and certainly what we’ve learned is the more proactive, the better. Not necessarily in a super pushy, aggressive, adversarial way, but more as, Hey, I want to know what’s going on with my child, especially so I can do at home what you guys are teaching ’em in the kindergarten. I mean, one of the biggest challenges that a lot of moms have and parents have in the states is inconsistency, right? That what goes on in the classroom isn’t necessarily followed at home after school on the weekends. And of course then there’s that disconnect and your child doesn’t learn quite as quickly because there’s not that continuity from classroom to the home kind of structure. So as you went down this path, what were sort of the next learnings or the next steps that you evolved or you found out or you discovered
Diana Danu (07:57):
Well as something that should be mentioned, especially for your US audience? In Romania, the parents assembled the care of their children by themselves. So essentially as we moved along this path, as we understood more, we obviously reached the conclusion that the US has come to a long time ago and has implemented incorporated it into the support system, which is that the BCBAs are a part of any team that work with a special needs child. At the time, we didn’t know that was a non-negotiable factor in any decision. And the therapists that we were working with were not formally educated or they were not formally accredited. They had some kind of specialization. Most of them had psychology degrees, but they were not specifically trained to work with special needs children. And the other items that obviously came to us a lot later, and I wish it did earlier, but I hope that our conversation will help parents get to that point very quickly, is that we needed to get involved.
(08:58):
My husband, our family, grandparents, everyone needed to be on the same page. We all needed to have the same plan. And I reached this conclusion when we realized after one of the coordination sessions that took place on a monthly basis. So we would go to the center, to the therapy center, and we would sit in on one of Gabi’s sessions, the fact that he was doing many things on command, but none of those things would transfer to real life, not even the simplest things to everyday life. He was, as he was two years prior when he first started going to that therapy center. And that’s when we had a turning point and I started doing what all the moms do, more research and more talking to other moms. That’s the important part. Research online is wonderful, but once you get to speak to a mom and share what you experienced, that’s when the magic happens. So through a chance encounter at a park, I spoke to a mom who spoke very highly of a different center of a different group of therapists, and there we went, and it was definitely a big change. The involvement of the parents was to a higher degree, kids had a lot more social interaction with each other. It was a little bit less one-to-one therapy, but more social engagement, more communication, more fun activities outside. And this went on for another two years when we were ready for the next stretch of the journey.
Mike Carr (10:20):
So let me comment on a couple of things you said, which I just think are hugely insightful, and one is not every BCBA, not every therapist is the same, and this seems very obvious. And so what we’ve experienced, because our son’s much older, he’s now 36 years old, is that we’ve probably gone through or worked with a dozen BCBAs over that time, and the best BCBAs do exactly what you described, Diana. They try to integrate the entire ecosystem that your child lives in, including family and relatives and other therapists outside of school and the TAs in school, the assistants in school to make sure, first of all, everybody understands the principles of behavior therapy so that the grandparents don’t come in and all of a sudden start giving you a hard time because doing certain things with your child that seems counterintuitive, you’re ignoring behavior that’s bad because you don’t want to reward, you don’t want to recognize something that’s bad because in often cases, your son, our son’s just looking for attention and they don’t care whether it’s bad or good behavior. If they get attention, that sort of motivates them to continue the bad behavior, but that understands that, right? If everybody, the grandparents, the cousins, the aunts, the uncles all understand, oh, okay, we need to ignore this, or we need to intervene this way and not encourage and certainly not bribe to discourage behavior. Then there is that consistency and that flow. Do any stories come to mind where you’ve experienced that or did you already have that handled?
Diana Danu (11:45):
Oh, no, no. Grandparents will be grandparents in any part of the world. So if the child asks for something he wants anything that he’s not supposed to have right now or that he’s supposed to work first and then get his reward later, grandparents will circumvent any of those rules to a certain degree. And unfortunately, our grandparents are far away from us, so we don’t get to see them very often. We do get to see them on school vacations and on school vacation. I have to admit, we kind loosen the reigns a little bit and they get to enjoy their grandkids as much as they can. But when they’re on our territory, then it’s definitely in our rules. So grandmas to, they don’t have to tiptoe, but they still have to take a good look at the board that has whiteboard in the house where we have the current programs that Gabi is being taught, and they kind of take a look and then they ask, how do we do this? How do we do that? So those are kind of the rules of the house when it comes to grandparents.
Mike Carr (12:40):
Let’s talk about socialization too with friends, because I think that’s just hugely important. And one of the things that we experienced in some of the schools that our son was in, because he had aggressive behavior and he’d have outbursts from time to time and screaming, some schools wouldn’t tolerate that, right? And so they’d isolate him. My wife, Kay, even walked in one day and he was physically strapped. He was physically restrained to a big wedge to where he had Velcro straps on his hands, so he couldn’t move. He was, I don’t know what exactly he was doing, but they felt like they couldn’t manage the behavior. And to us, that was just abhorrent, right? It’s like, look, remove him from the classroom, let him settle down, get him out of the noisy environment, but don’t totally give up. What experiences, if any like that have you had with Gabi or you’ve been able to avoid that kind of misunderstanding or that kind of treatment in some situations that you felt was very inappropriate?
Diana Danu (13:32):
It’s heartbreaking for any parent to hear Mike, and you’ve had a lot more experience in this area than I do because Michael is a lot older. We haven’t had a situation where you would see any kind of aggression or limiting behavior towards Gabi. He’s never been aggressive in that regard. And also he’s very small, so if he doesn’t like it, he might yell or might throw the thing on the floor, but that’s usually what kids his age do. So it doesn’t really trigger an emotional or a physical outburst. What I did notice though is that because in the kindergarten especially, I’ll revert to your question about school a little bit later, but in the kindergarten, it was very small and the kindergarten teachers knew about his diagnosis, knew that he was relatively isolated, that he would not speak to other children, and that if he were left alone, he wouldn’t bother anyone. And that’s where the heartbreak comes from your story and from my story, because when we would come to pick him up in the evening, the teacher would be saying things like, oh, he was okay. He ate a little bit, or he looked around or something very neutral. Then once, I think they had some kind of an event and they had a video of the entire classroom, and I just noticed that Gabi was sitting comfortably but in one corner with still the toy that he got from home. And he was just doing that.
(14:44):
And at that moment, I realized that’s probably how he spends his entire day because he was not engaged, they didn’t know how to engage him. The children were obviously playing and roughing it around. I don’t know how long he spent on that chair, but he broke my heart. And after that, that’s when more things came to the same turning point. And when I started looking for other options, because this is where we are now in today’s setup, Gabi has a team of two therapists that work with him. It’s not around the clock, it’s from eight to five. One of his therapists companies, him to school, we have ABCBA with whom we meet on a weekly basis and discuss his progress, discuss challenges at home and in school. And his day starts in a regular public school where we found a lot of understanding from the principal and his teacher.
(15:35):
They do not have a lot of support because just like in the us, the special ed teachers are overwhelmed and they have many students to whom they need to supply services to. But our setup right now has resulted in Gabi being happy, being relaxed, not having to be driven or taken to different centers across town. And his therapy is integrated in school, at home, and in his other leisurely activities. He really enjoys piano and he enjoys swimming. And even his swimming instructor at one point came to me, and then I went to the BCBA, and I asked him that Gabi wanted to just splash around and not interested in learning how to swim because he was good. He was very Well, thank you very much. I’m not going to do anything important. And the BCBA offered a few suggestions, and then the instructor came back and said, you know what?
(16:18):
It works. He doesn’t understand this. Do this first, and then we play. So it’s a very simple structure, but having someone who understands the big picture and knows Gabi really helps with smoothing our path as we move along. I would be remiss if I didn’t mention the fact that I was looking for support for Gabi in school, for his therapist. I found a person who has become a mentor. His name is Damian Nedescu, and he is the father of a young gentleman who was diagnosed with autism almost 20 years ago, and now he’s a college graduate, and he’s doing very well. And Damian, with his knowledge and all of the experience that he had with his own son, because 20 years ago, their family was among the first who invited ABCBA from uk, I believe, to come and coordinate his son’s program. So with his support, the therapy that we were able to do at home, even without a BCBA has been amazing. That was the period of our lives when we saw the best outcomes for intense, but very structured and concentrated strategies for autism. And it was under Damian’s guidance that we saw a lot of improvements, including eye contact and including joint attention, socialization and so much more. And that’s when we realized as a family that what we had before was not working and we needed to change. And that’s how we ended up with the structure, with the setup that we have today.
Mike Carr (17:42):
Oh, and that’s fantastic. And what I want to do at this point is I’m going to end this episode, everyone that’s watching for this week, and I want to with Diana next week. I think several of the things we need to dive more into next week, which Diana has mentioned, is the need to move past just glorified babysitting that sometimes in the classroom or even with a therapist, if your son or daughter’s happy, they’re not pushing hard enough, they’re not necessarily trying to get them to learn, to grow, to be challenged. You can’t push too hard. So it’s a balancing act and finding a mentor like Diana found is so important. So thank you for watching this week, and please come back next week as we continue this really exciting episode with the Warrior mom to Diana over in Bucharest. Thank you all.
Diana Danu (18:29):
Thank you, Mike.
