Hi! My name is Lexi! I’m almost two years old, and this week after 7 months of evaluations, and 4 doctors later, my Mommy and Daddy were told this week that I have a condition called Regressive Autism Syndrome or AAS (Acquired Autistic Syndrome). My Mom asked if I would write about it on her blog, because she knew there would be so many questions, and she figured it would be easier if they were all answered in one place! I’ll do my best to share what I know so far, and my Mom said that she will continue to keep this journey public, because she said that sometimes people feel less alone in scary situations if they are able to read about someone else’s experience!
Did you know that 1* in every 68* kids in the US has some form of Autism??? Out of those kids, 77%* have AAS. What makes AAS different from other forms of Autism is the fact that it’s mostly our speech that’s affected! Some children with AAS also show social and/developmental delays, but loss of speech is usually the first and most prominent sign. Speech delays usually start around 15 months, where as developmental and social delays can start as early as 10 months! In fact, did you know that I still have never learned to shake my head, point at or grab things??? I also still wave backwards, and just learned how to clap two weeks ago!
The delays usually start slower, and then will speed up around the age of 2. 30%* of kids with AAS completely stop speaking by the age of two. Did you know that I haven’t said any real words since March??? I speak in this cool little language of my own. My parents have even adapted to the certain sounds I make when I want different things!
Some other cool facts about me that pertain to AAS:
- I don’t respond when my name is called! Not because I can’t hear you, or can’t understand you, but because my brain likes to focus on one thing at a time. So if I’m playing with a toy, and you call my name for snack time, chances are I won’t acknowledge you until you come kneel beside me and gently say my name! Then I’ll be so happy to see you and will have no problem following you over to my highchair!
- I LOVE my alone time! So much so, that sometimes even if someone gets down on the floor with me to play, I hand over what I have and find something else on the opposite side of the room. If you try to follow me, I will stomp my foot. This is my way of asking you to please respect my space!
- I have a harder time processing my emotions! Because I’m non-verbal, I can’t talk or make normal gestures like other kids my age! So if Mommy or Daddy is having a harder time understanding me, it’ll send my little brain on over drive. Usually, I will go find a wall or a flat service I can sit against and sway back and forth against it to calm down. If I’m REALLY frustrated though, I will start to flail my arms around and make a really funny “hissing” sound with my tongue over and over. This also happens when I get really excited! When I am excited, I like to go find a corner or something to duck around, and I half smile, half cry, because that’s just my brains way of processing what’s happening around me!
- Even though I can’t talk, I am still very repetitive in the noises I make.
- I have quite a few obsessive interests, which my parents think are really funny! Anything I can hang from my fingers and spin around, I do! My Daddy will even tie things like string or zip-ties around my favorite toys so I can have the most fun ever!
- Spinning in circles is something I do when I’m really happy! I get really dizzy sometimes, too! Spinning, rocking back and forth, and arm flapping are known traits of children with forms of Autism!
- ROUTINE! My routine is EVERYTHING to me! I get very upset and effected by minor changes in my day to day life. Sometimes if the change is big enough, it will take me a few days to recover, and until then I will usually have a few of my famous tantrums where I flap my hands all over like a bird!
- My baby dolls are my favorite toys to play with, and I play with them the same way each time! First, I empty them all out of my toy bins one by one, and then I see how many I can carry at once over to the couch! Once they are all there, I line them up on the cushions, and play with each one individually until it’s time to put them back!
- I also really love toys with lights or wheels. I love to get my eyes as close to the lights as possible when they flash, and sitting and spinning the wheels on my toy train is the first thing I do when I wake up in the morning!
As of right now, socially I have not been impacted by AAS. Social skills, if they are going to be affected, tend to start regressing around 19 months. I actually have another evaluation at the end of the month to check on me and assess my social skills! Starting in August, I get to do speech therapy with a teacher over the computer THREE times a week! Isn’t that so cool??? A whole FaceTime JUST for me! My Mommy is really happy that she works at home so she can focus on getting me talking!
My Mom told me there would be some questions on when my delays started, the goal of therapy, vaccines and more, so she’s going to take over from here and try and get ahead of any questions that some of you might have!
Why did you intervene so early? Aren’t most kids on the spectrum not diagnosed until the age of 3? That actually is a super common misconception! While a lot of cases are not diagnosed until 3, it’s actually very common to start screening for developmental delays around 18 months! For instance, we noticed Lexi’s delays starting around 11 months, and when her pediatrician started noticing a constant decrease in her well-child evaluation forms, we decided that at 13 months we would begin the process of early intervention. Clinical studies done by the CDC have actually shown that children with AAS who are actively involved with early intervention have a 70+% chance of fully recovering by early adolescence!
My child didn’t start talking until they were almost 5! Didn’t you just consider that every kid is different and she will talk when she’s ready? Such a great question! Actually, no, that was never a consideration of ours and here’s why: there were many other physical signs on top of the speech delay that lead us to further pursue early intervention. Speech is just the main focus right now. In about 6 months or so, the doctors at Children’s could want to include a more extensive neurological exam if she hasn’t caught up developmentally yet.
Do you think this could have been avoided if you breastfed? No. As of right now, according to our pediatrician and our ABA therapist, there are no studies that directly correlate not breastfeeding and Autism.
Did you vaccinate? Absolutely we did, and will continue too!
But there’s so many people out there that say vaccines cause Autism, especially the MMR vaccine which is given at 12 months old, and isn’t that normally when regressions start happening? Obviously, I’m not a doctor. I can only share our experience. A little backstory… Lexi had a growth condition while I was pregnant called Velamentous Cord Insertion with Vasa Previa (look it up, it’s wild, and only effects 1% of pregnancies!). She was born full-term, 40 weeks and was only 5 pounds. Because of her size, for the first year of her life we actually got to go to the doctors once a month for a height, weight and blood sugar analysis (since sometimes smaller babies have trouble regulating theirs!). Also, because of her size, we opted to do delayed vaccinations. This was something our pediatrician had suggested, and once we researched it, we felt like it was the best decision for our family. So some vaccines were delayed, and some were split up. Around 11 months old, Lexi got the flu really bad. I mean, this kid was sick for about 2 weeks and nothing that we could do was making her feel better other than time. Her doctor, knowing she had been sick right before her 12 month appointment, opted to push her MMR vaccine to closer to 14 months, to make sure her immune system was fully functioning, and since she was already being watched for growth, it would give her some time to plump back up and catch up on the weight she lost from being ill. Lexi began regressing right before her first birthday in October, and didn’t get her MMR until the end of December. So in our case, no, I do not believe vaccines had a play in any of this. And if they did, Autism is not going to kill her, however the measles just might.
I have not heard you speak about any of this until now! Are you sure she really has Autism? I have been quiet about it, only because there was (and still is!) so much we DON’T know. Autism isn’t a “one size fits all” diagnosis. There is new information being discovered every minute! To be honest, I also was so tired of casually mentioning my concerns to friends and hear “I was over reacting” or “she’ll do it when she’s ready Mama!”. And while I know all of that was coming from the absolute BEST place, when it’s your child, sometimes you don’t want to hear about your “friends, cousins, sisters, nephew who also had speech delay but turned out fine and he didn’t need therapy” (insert MEGA eyeroll here!)
How is your husband/family adapting? Really well, actually! Kyle and I have tried not to get too overly emotional about this. When you have a touch and go pregnancy, something like Autism really puts things in perspective. We have SUCH a great kid! Anyone who meets her falls in love with her! And my family has been so supportive and on board. My mom has been in childhood education for 20 years– so she has been a really great person to help with research, and she will be very involved in Lexi’s speech and occupational therapies when Kyle can’t be!
Will you keep us updated on Lexi’s journey? Now that all of this is out in the open, absolutely! It will be nice to have a place where I can share concerns, updates and I’m sure a little frustration along the way!