It's been tough this past year since the diagnosis. I think the hardest part is watching older videos just 10 months prior and seeing the change in him. When we looked at the video of his first birthday, he would respond to his name, give eye contact, and not ignore people around him. Now if we call him it just seems like he doesn't hear us or he just ignores us. He has gotten better with eye contact with the therapy but before he would look past us and not at us. We constantly have to worry about what he is doing. We have to get latches for the door because he learned how to unlock and open all of them and he will run outside. He also gets into everything regardless of the consequences and if he gets hurt he will go back and do it again. For instance yesterday the door to the pantry slides, he was opening and closing the door constantly he then smashed his finger started crying and then after calming down he went right back to doing it.
First off, welcome to the club. We had a similar situation with delays in our son's diagnosis, but I turned into full daddy bear mode and forced the military to get my son the stuff he needs immediately. It sounds like you guys did the right thing in following up multiple times with the medical folks to get your son squeezed in earlier. You will learn through this process that you and your wife are your son's #1 advocates. Nothing will come easy and nobody will open any doors for you. All the treatment and therapies you secure will require you to pester the living hell out of your pediatrician, your insurance company, and your school district.
We've been told no every single step of the way. My wife and I have become intimately familiar with our legal rights, our insurance coverage, and the services our school district must legally provide our son. As a result, he receives 26 hours a week of combined ABA, early intervention preschool, speech, and occupational therapy. When school is not in session his ABA hours jump up from 12-14 a week to 20 a week. Our insurance coverage tends to not authorize anything the first time, so I have them on speed dial. The last time I spoke with them, the representative said there were more notes associated with my account than she had ever seen. I told her if they would do their job right the first time, there would be zero. Yes, sometimes you have to be a dick with these people.
It sounds like your son has a rarer type of regressive autism, particulalry since you can look back at earlier footage of him and see different behavior. The biggest difference her is your son was showing normal behavior then seemed to regress. That is atypical in the sense that most of us started noticing our kids were showing abnormal social behavior at around one and a half to two years old. Some people will try and tell you regressive autism isn't real, but parents know that is a bullshit line. One of the parents of a ASD kid at my son's therapy center witnessed the same change in her son at 2. He went from talking and looking people in the eyes to showing all the classic signs of autism. That must be terribly heartbreaking to witness, and I feel for you.
My son shows many of the symptoms of high funtioning autism, maybe borderline with what used to be diagnosed as Aspergers. He is vocal with a very large vocabulary, but he doesn't always use pragmatic language. He asks for things he wants and needs, but most of his daily talking comes in the form of repeating canned phrases from books, songs, or TV shows he likes. He has improved ten fold in eye contact, but he still struggles there. He is only recently starting to show interest in the social behavior of his peers...he tends to prefer adult interaction since we are a lot more predictable than other four year olds.
The best advice I can give you is not to worry about where you son is now, but instead focus on how he interacts with various therapies and his rates of progress. If your son isn't receiving any form of ABA yet, I highly recommend looking into it. Oklahoma laws aren't always the most progressive, but lots of states require your insurance policy to cover it. There are several types of ABA, but I find the ones that engage in your child's natural interests in a floortime play approach to be the most effective with our boy. ABA has squelched most of my kid's behavioral problems, helped him understand queues and appropriate responses, and really increased his confidence around otherrs. The premise is to reward positive behavior, ignore and squelch whining and negative behavior, encourage eye contact and verbal/nonverbal communication, and teaching your kid how to play and interact with others. A very common sign of ASD is lack of imaginative play, so a good ABA therapist will teach your kid some basic practical play skills that will help them interact with kids in school.
Speech and OT are crucial, and it sounds like you're already on that wagon. Kids on the spectrum oftentimes struggle with speech, and those who are verbal might have issues with pragmatic/conversational speech. OT helps with sensory issues, as well as fine and gross motor skills. My boy has flourished with help on the fine motor side, but still has a way to go.
Engage your kid in his strengths. Our son is amazingly good at math and reading. He's been reading since he was 16 months old. We use books and words to help him understand the world around him.
There is a growing amount of literature supporting dietary changes aiding many kids on the spectrum. Most doctors take the, "It can't hurt, but we don't have any documented proof of it being effective" approach. Parents who have placed their kids on more restrictive diets and see positive benefits will tell you it has perhaps made the biggest change in their kid's life. The theory is children with ASD may have issues processing and digesting protein peptides from gluten and casseine, which results in digestive issues. frequent upset stomachs and diarrhea, and even measured inflammation in the intestinal track and their brain. In essence, they can't properly digest the protein peptides so they remain in the bloodstream and reach the brain, creating a dopamine like effect. Kids who show these signs have been found to have increased levels of bacteria in their digestive tract, and tend to gravitate almost exclusively towards bread and cheese based meals. Our pediatrician said our son shows signs of celiac disease and possibly a milk allergy, so we've recently started him on a GFCF (gluten free, casseine free) diet. We're already seeing positive signs one week into it.
TL;DR - Welcome! Look into ABA, speech, OT, and any other early intervention stuff you can get. Don't take no for an answer. Focus on strengths, keep a positive outlook. Your kid will probably see significant progress with early intervention. Some parents see remarkable results with dietary changes, but there aren't lots of studies indicating effectiveness.
