Regressive autism is both heartbreaking and confusing. Whether you have a young child who is just starting to show signs of autism, used to say some words and now lost them or used to wave and now doesn’t, or even an older child with a diagnosis of autism that regresses in some areas, it is very scary and heartbreaking and confusing.
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Regressing of any skills when young, or older is heartbreaking. A lot of times it could be a medical issue that’s causing the regression. It could be an abrupt regression like overnight your child starts seizing or overnight he starts not talking. According to the research, 20 to 30% of parents report that their child did shows signs of regressive autism, that they were developing on track or mostly on track, and then either had a sudden or slow regression. I noticed a regression mostly in hindsight with Lucas shortly after his first birthday. I was pregnant with Spencer, so I wasn’t really noticing, but he regressed. He stopped saying hi, he stopped waving. He used to really have a nice wave and you think like, oh, he’s just becoming a picky eater or he has a cold or he has an ear infection and he’s just a little off.
And it started spiraling and he was actually regressing and the little cute baby songs and fill-ins that he used to do were gone. But I was pregnant then I had the baby, then it was wintertime. Older kids can regress too. In that situation, it is very alarming when suddenly a 10-year old regresses, even a 10-year-old with severe autism if they suddenly lose skills that they once had or again, more slowly, how do you turn things around? How do you help the child get unstuck? Step number 1 for any kind of regressive autism or lack of progress is an assessment. And that doesn’t have to be waiting in line for a doctor to assess or having a behavior analyst assess. It can be a 1-page assessment like I created that you can get at no cost at marybarbera.com/join.
You can get a guide with that 1-page assessment and you can get started. So my thought is you really need to step back and look at the whole picture. So when you assess, we need to know the age of the child and what their medical status is. Do they have a diagnosis? Do they have other medical complications and that sort of thing? And speaking of regressive autism, it’s really, really important that especially if it’s a sudden or even a slow regression that you rule out medical problems such as high lead levels, brain tumors, any kind of metabolic issues, and hearing loss can all mimic signs of autism. There are also auto-immune problems. There are bacterial infections like PANS or PANDAS, which I’ve done video blogs about that can all cause a regression or cause symptoms of autism.
You do want to go to a pediatrician or family doctor. You might even need to go to a specialist who specializes in autism treatment and really look closely to see what’s going on. So whether it’s a regression or just the lack of progress in any area, whether we’re talking about a child who is not talking and you don’t know how to get them talking, if they are 10 years old and not taking a shower themselves or if they are having reading problems or if they are having sudden or chronic problem behaviors that you can’t control, you need to assess where they’re at and where they should be at. If it’s a young child, I did a video blog on the MCHAT. These are tools you can use to check yourself to see is my child falling really far behind?
I did a toddler guide, Is it autism, ADHD or typical toddler tantrums? You can get that at marybarbera.com/toddler. So just assess and, and when you assess, don’t count language and skills the child had more than a month ago. Especially if you’re seeing a regression because it’s not really helping the situation if you say yeah, my child touches body parts, but he can only touch his body parts if you sing a song or you haven’t heard the word ball for 3 months, but you’re still counting that as a word and I get it. I totally did that. I totally counted all kinds of utterances that I heard from Lucas before he regressed. So step number 1 for lack of progress or regressive autism, is an assessment: medical assessment, language assessment, self-care assessment, and problem behavior assessment. You want to know where your child or client is and where they should be at.
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I use the VB-MAPP as a base. I also use the self-care checklist, which I find really helpful, by Dr. Mark Sundberg. Whether you have a young child or an older child who’s stuck, we also need to look back and look at safety, look at independence and self-care and look at happiness too. I think the field of ABA gets really caught up in diving in and trying to teach kids, but we really need to step back and make sure they’re safe and make sure they’re happy, make sure they’re comfortable and stop continuing to push. If there’s a problem and if they’re stuck, and you just keep pushing with the same programs, the same targets, the same procedures, it’s not going to get them unstuck.
I have a new approach that is getting kids unstuck every day, which I am credibly excited about. So for Lucas, my son who did show signs of regressive autism and is now 23 years old, despite 2 decades of the best ABA therapy I could find, he remains non-conversational. That doesn’t mean I don’t continue to teach him language. We teach him new language for new work at his job. When he goes to work, he has different jobs so we teach him the names of the jobs and the materials that are part of the jobs. He needs to be able to request the parts of the jobs. I’m also teaching him the names of new people that are in his environment, people at work mostly. I’m just started to teach him to answer why questions like why is the pool closed? Or why is so-and-so not here today? Or why didn’t you go to church with daddy?
And just trying to teach him these things because it’s working. We’re having some success. But just to remind you that not all kids are going to be conversational and it’s not because of lack of trying, I’m not here to tell you that there’s no chance. There’s always hope. There’s always a chance. Working on conversational skills with Lucas answering why questions, he can answer a variety of questions, but answering why questions teaching him yes and no responses that are reliable, those kinds of things will really improve his quality of life. For Lucas, I believe he has reached his full potential but that’s not a once and done thing. It’s continuing to have him reach his fullest potential, be as happy, be safe, be as independent as possible.
He has major problem behaviors at or near zero and a lot of that actually was due to medical intervention. I did a podcast with Dr. Murray, Lucas’s psychiatrist, that’s episode number 28, you can find that at marybarbera.com/28. After you do an assessment, then step number 2, no matter where you’re stuck is you want to make sure that if you’re stuck, your plan, your goals, your targets, your programs aren’t correct. It’s never the child’s fault. It’s always the people who are very, very much trying their best to help the child. I use the analogy that you need to peel the onion back. You need to find the layer where your child is going to be successful. So step number 2 for being stuck or seeing signs of regressive autism, after an assessment we have to revise the plan. Revise the goals, the targets, and the programs.
If there’s no progress in a program for weeks or months or years, you’ve got the wrong programs, goals, and targets. The child is missing prerequisite skills. I remember my first consultant who came in. We had a Lovaas ABA program in the beginning and I talk about that in episode number 1, how we switched to a verbal behavior approach. It’s all throughout my podcast, but I remember her saying you want to get into a program and get out of a program. If you get stuck for weeks or months or years with no progress or limited progress, it’s not the right program and you might have to put the program on hold and go and fine-tune the prerequisites are that are missing.
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