Signs of Developmental Delay Bring Parents Into Autism Denial

When you start seeing signs of developmental delay, it’s easy to think it could be autism. You may go into denial as I did many years ago. Maybe you’ve talked to family members who say things like he’s just a little late talking and he’ll catch up. Don’t worry. Maybe you see red flags, but then think of all the other things your child can do well, and maybe you’re concerned about pinning a label on your child. Denial is wasted time not getting your child the therapy that they need to reach their fullest potential. So today I’m going to talk about denial and what to do when you notice these signs of developmental delay, and how an autism mom, Deidra Darst, handled this situation.

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In today’s video blog I’m sharing a small excerpt from a recent podcast episode with speech and language pathologist and autism mom, Deidra Darst. She talks about her struggle with denial when seeing signs of developmental delay in her son, and how she managed to start getting applied behavior analysis (ABA) services. Deidra has been a speech and language pathologist for nine years and has always worked with kids on the spectrum. Her younger son, Collin, he’s now five, and he was diagnosed with severe autism at three, And Finley, her second son, is just a year older than Colin.

Finley was a late talker, so she was concerned about that. At an early stage, Collin was hitting milestones. He’s was crawling, and then as he got older, she started to realize, oh, language, speech. Deidra saw things with Collin, hindsight being 20, 20, he was six months old and that was the first appointment with the pediatrician that she said, there’s something going on because he was a happy baby, but he was a fussy baby.

We soon realized there were some belly issues and things like that. But when he was about a year old, that’s when Deidra really started to notice he didn’t have an interest in toys. But when she would say that to her family, they’d say, you’re crazy. You just know too much. Just don’t worry. He’s fine. This was all reinforcing the autism denial Deidra was going through.

Deidra was mentioning it at well visits, that she thinks her son might have some signs of developmental delay. Because her best friend was an OT when Collin was about 15 months old, she asked her to do a developmental assessment and everything was within normal limits except for the language. Deidra would see things, but then would talk herself out of it. For example, she would say, “well, but look how social he is. He doesn’t have any sensory issues.” And then she would say “but he doesn’t always respond to his name, but…” and it was this constant back and forth that drove herself crazy. When he was two and a half though, it was like a light bulb moment that, oh, he does have sensory issues.

That’s outside of anything she understood, so she called in birth to three. When Collin was two, she told her doctor about autism concerns and the signs of developmental delay she was seeing. And the pediatrician said to her if he can point, he’s not autistic and a few other things, which isn’t completely accurate and she never saw that pediatrician again. When Collin turned three, Deidra put him in music therapy and OT, and the music therapist recommended ABA. She didn’t really know what it was, but she was pretty sure she didn’t like it.

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Deidra was also recommended a clinic that would change her mind, and when she went for a visit it was like angels sang and answered all of her prayers. It was just everything that Collin needed. Doctors were saying, oh, autism ABA, but she didn’t necessarily get information on resources or where to go, how to get ABA. Because she worked in the field, she knew how to find it, but it could be easy to see where other parents would feel completely lost. Once ABA was started Deidra was shocked; she told them, “I don’t know what kind of magic wand you have, but it’s amazing.”

When Collin had just had about 25 hours of ABA, he was already a different kid. He had learned to wait. He could sit. It was just amazing, the things that he could do. Deidra knew he needed this one-on-one intensive intervention and that we could help him. He had potential and he could learn. We just had to get in there and when reading The Verbal Behavior Approach, she knew ABA was everything Collin needed.

Collin was getting about two hours of ABA a day and even at just two hours, it was life-changing. One of the issues she and I both noticed is that we feel like pediatricians don’t recommend testing. They don’t recommend therapy and people will go to their pediatrician and their doctors and we love them and you know, we appreciate them and all those things. But they’ll go to their doctor with a concern and they’ll say well don’t worry about it. They’ll talk when they’re three, they’ll catch up. It’s okay, don’t worry about it.

And that’s a complete disservice because they need that early intervention and we see how important that is to get in there early. You can still do things later, but if you can get in there early, you’re going to affect so much more change. And I feel like if your doctor tells you, oh, don’t worry about it, then people don’t worry about it. And then they wait and then they wait until they’re four and they go into preschool and then the teacher says, whoa, what’s going on here? And we’ve waited till four to get anything.

I feel like we all as professionals, SLPs, OTs, PTs, BCBAs, if we can all work together, how beneficial is that going to be? If we can get teachers on board, I think if we can have everybody on the same page and working together, then that’s just going to benefit the kids.

I hope you enjoyed this video/article on signs of developmental delay and autism denial. If you want more content, check out the podcast at marybarbera.com/podcast. I’d love it if you would leave me a comment, give me a thumbs up, share this video/article with others who may benefit, and for more information, you can attend a free online workshop at marybarbera.com/workshop and I’ll see you right here next week.

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