Wednesday, April 4, 2012

Our Introduction Into The World Of Autism

While I have in the past posted about Shaun's Autism, but I realize that I have never fully explained how our journey into this crazy world of Autism began, so I wanted to share our personal story with all of you.

Early on, Shaun seemed to be developing typically. In fact, I had tossed out all those developmental guidelines because frankly, he was seeming to hit them earlier than stated in the books. He started repeating simple words, walked on schedule...he even started using the potty at just 10 months old. We had no worries about his developmental progress.

As a new mommy, I was concerned about giving him his vaccines. By now, we've all heard the theories of vaccines being a cause of Autism. Having a boy, those theories were scary. In fact, I had told a few close friends of mine during my pregnancy I worried about the possibility. Having had a brother with a probable diagnosis of Autism (he passed away before being diagnosed, back in the 80s when so little was known), it was even scarier! I debated and researched and finally talked it out with his doctor at the time. After much discussion, I came to believe that if anything in some children, the vaccines might trigger something that was already there, and this doctor assured me that with a child as social as my Shaun, there was no way he would ever be given that diagnosis. We had nothing to worry about. (Looking back, there were already signs there we had overlooked, I do not believe that FOR SHAUN, the vaccines made the difference, though I have personal friends who have seen otherwise in their own children.)

So anyway, after the vaccines, life went on as normal. Then a few months later, something changed. Shaun stopped using the language he'd had up to that point, and eventually stopped using the potty (he at that point had only been having minimal pee accidents). This happened sometime around 18 months or so. Perhaps this should have been a red flag for me, but we believed these were all just his reaction to all of the changes he had going on at that time. At 15 months old, his daddy returned home from a deployment. We had been staying with family and so we packed up and left everything he knew to return to California. Shortly after, we returned BACK to Indiana/Illinois for about 6 weeks for an extended leave, then back off to California. Within the few months around his 2nd birthday, things continued to be inconsistent. I had read in the past about children being affected by change like this, so I tried not to worry. After all, I had a doctor's assurance that my child would NEVER be diagnosed with Autism...he would catch back up soon enough. But by the time his second birthday came around, he'd not really gotten much of it back...except the lines he was quoting from movies and the songs he was always singing. Not knowing about scripting at that time, I did not find this concerning either...hey, he was talking, right? So I worried less about his speech. But call it a mother's instinct, but something still bothered me, so I talked to his new doctor about my concerns. While his speech 'seemed' to be fine, he was not yet answering any questions, or responding to any simple directions...and really he would only respond to his name when daddy shouted it in a particular tone. Initially the doctor told me not to be concerned, boys tend to develop later than girls, etc...the same lines that most parents with a speech delayed boy have heard, I'm sure. But to humor me, he got down on the floor and tried to interact with Shaun. 'Where's mommy?' No response. 'Where's the car?'. Still nothing. He continued to try to gain his attention and still...absolutely nothing. So he decided to send us to a speech evaluation. (Later I found out that the doctor himself had a child on the spectrum. I truly believe had we had any other doctor that day, it would have taken much longer to get that diagnosis, as it did for so many others. We were very lucky.)

Once we returned home, I turned to Google. Much to my surprise, I found Shaun did indeed have many red flags for Autism. Thankfully, we only had to wait about a week or two to get that speech evaluation. During this evaluation, they went over questions with us about his speech usage, and also his nonverbal communication as well (which at that point was pretty much nonexistent). She then focused on Shaun- asked him questions, tried to get a response...same results we'd seen at his checkup. She concluded that he was certainly behind and suggested a speech group class and a developmental evaluation. No mention of Autism. But knowing my concern, before leaving, my husband asked her about it and she informed us what I'd already found- he did have a lot of red flags.

In retrospect, I am so glad that Matt asked that day, because when I showed up for his first speech class a week later, I was bombarded with terms like IFSP and ABA and GFCF, Regional Center and EFMP...what in the world? As it turns out, this particular speech class was specifically for children on the spectrum. Though the initial shock of being placed in that class was confusing, I learned a lot in his time in the class. They used a lot of sensory play and I came to find out that Shaun was a sensory seeker, and discovered that during super active play, his eye contact was a million times better. We were also introduced to a weighted vest, which improved his focus and again, eye contact greatly. I could truly have not asked for a better introduction.

He had started speech in August, and we had to wait until October for the developmental evaluation. To me, this seemed to take an eternity, but finally October rolled around. Going in, I think I knew what the outcome of that day was going to be, and I tried to prepare myself for that news. I'm not sure you can ever fully prepare yourself for that though. (To make matters worse, my husband was out of state for 6 weeks for training.) This evaluation was done by a childhood psychologist and was again partially questions for me about his behaviors, speech, development, social skills and so on and partially observing and interacting with Shaun. It was one of the longest days in my life. Even having a good idea beforehand, it was hard news to take. Some parents say that the initial diagnosis can come with a sort of a mourning feeling (losing the life they had imagined their child would have)...I can't say that that is exactly how it was for me, but I was certainly sad knowing the struggles and ignorance my child would now have to face. But I left there with an abundance of resources to look into and the knowledge that there were many amazing services available in our area and with therapy, Shaun would still have an amazing future. A week later, Shaun was reevaluated by the San Diego Regional Center, who confirmed that diagnosis and again by a developmental pediatrician, also confirming- not that we had any doubts ourselves. Shaun started ABA therapy immediately after and continued on with his speech (though it was decided that he was not quite ready for the group class).

This was August-October of 2009. Shaun was two years old. Now at four and a half, I cannot believe the progress we have seen in him. So much of this was because of the early intervention he received. Though I believed at the time that I should have seen it earlier, I know now that we are extremely lucky. Our diagnosis process took just a few months. As I said, this seemed like an eternity at the time, but there are so many families who have to fight for YEARS just to get their child evaluated, let alone getting the services in place they needed. I have also heard that many families are given the diagnosis with a sense of hopelessness and nowhere to go from there. Shaun was diagnosed at Rady's Children's Hospital in San Diego, and we were given a huge packet with everything we needed to know. Ours is unfortunately a very rare case it seems. I am not sure how or why we got so lucky, but I am certainly glad we did.

I suppose the greatest thing to be taken from our story is to follow your instincts. Had I not followed mine and talked to the doctor about my concerns, God only knows where we would be today. If you have even the slightest concerns about your child's development, bring it up to your doctor. It could be absolutely nothing, but if there is something going on, early intervention makes the biggest difference. At just four years old, Shaun has countless hours of therapy behind him that have brought him to where he is now, and I would not trade this boy for anything in the world.


  1. Your story is so much like ours for our daughter. Like you I'm glad I followed my instinct.

  2. Great post and wonderful info for others who may be going through a similar situation. It is easy to see God's hand in it all!

  3. Great Blog! I am a new follower. Please follow me back. Thanks!

  4. I can relate to this story- my son was diagnosed with Autism at 20 month old. Had I not followed my instinct, he wouldn't have had these crucial early intervention years. He was typically developing along with his twin sister, and around a year he kind of hit a plateau. I knew something was up and went against what everyone was telling me...and I was right. I'm so glad I found your blog! New follower and I can't wait to catch up on your posts and read new ones!


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