Ava was diagnosed with autism at the age of 2 ½. She didn’t have any verbal language until she was 4. I knew early on that something wasn’t quite right when she was about 5 months old. Ava would look through you and not at you. Around 4 -5 months of age is when babies start to visually connect with people. You can tell when they lock eyes with you and begin to imitate what they see. This was not Ava. As time went along, I would just notice little things. She walked early and would rarely gesture or attempt at verbalizing the need for help. She wasn’t making attempts at noises when she was 6 months old. Babies coo and make sounds earlier but here we were. Again, this was not Ava.
Then she turns 1, still, no sounds and no gesturing. This is about the time babies start to point at things and look at you to help them fill in the blanks. Babies usually grab you by the hand and take you to what they want. Ava was completely independent. Not desiring to connect with anyone. Did I mention that she never really slept? You know how babies will sleep long deep slumbers. Not Ava. It wasn’t that she was a “light sleeper” and would wake up to the slightest sound. She was just not asleep. She wasn’t fussy or colicky. She was just wide awake. Then there was her diet. Not a good eater…ever.
Still frequent visits to the doctor only revealed that “Oh, she’ll grow at her own pace. Children speak when they’re ready.” As nice a guy as the doctor was, I knew our time would one day come to an end with the very first pediatrician my child ever had.
Taking Matters Into My Own Hands
I decided that if she wasn’t speaking or making noises when she was 2 I was going to take matters into my own hands. We used to holiday in Seattle, WA (my home town) about 6 months out of the year when Ava was born. I decided that I was no longer going to seek much support from our original pediatrician. I also decided that I would take my daughter to the Speech, Deafness and Hearing Center on Madison St. in Seattle, WA. They referred me to The Northwest Center who came to our vacation home and did an initial assessment. From the date of the 1st call I made to them to an initial diagnosis was 6 days. Can you believe that? 6 days to get enough information to make the next steps. In the Bay Area it takes a minimum of 60 days just to get a call back to get the ball rolling to eventually get to the point of an initial assessment.
Ava was originally diagnosed with Developmental Delays. The recommendation was made that she have a Neurological Developmental Assessment. The Northwest Center gave me a bunch of resources in the Bay Area and suggested that I start the process of going down the list before we came back to CA from our holiday. I made my way down the list and started setting things up in CA for our return. We started at the Speech Play Group that was a county run program. Got started with the Regional Center process and immediately started my homework and mapping out a plan, a direction for supporting my child. I also made an appointment with our original pediatrician.
When we went back to the pediatrician for what ended up being the last time we ever interacted with him, the focus of the visit was on potty training. I’ll never forget, I handed him the report from Seattle where they diagnosed her with Developmental Delays. He looked it over, sat it down and asked, “So, have you started potty training yet?” I responded and asked him if he read the report I just gave him and if he had any resources for speech? He gave me a referral to Children’s Hospital Speech and Language Center. This was the last time we set foot in his office. I went back to my OB/GYN, who referred us to this particular doctor in the first place. She referred us to our next pediatrician who is PHENOMINIAL!!!! Our current pediatrician doesn’t know all the ins and outs of autism but he’s real good about giving much needed referrals without asking a bunch of questions. At the end of the day getting referrals is much better than having a pediatrician that “knows it all.” Those referrals are what get services later down the road. I didn’t know this at the time, but it’s like GOLD. By the way, the Children’s Hospital Speech and Language Center that we were referred to? Yeah, it had closed down several years prior and no longer existed.
We finally get services through Regional Center and I keep asking for the Neurological Developmental Assessment. No one in the Bay Area seems to have any idea what I’m talking about. SO, I contact the Northwest Center in Seattle WA and they refer me to Seattle Children’s Hospital. I call and we have an appointment scheduled in December when we are due to return to Seattle for the Christmas holiday. In the process of scheduling this appointment I happen to mention Ava not eating and they make an appointment to the Feeding Clinic that they have.
Assessments and Seattle
Finally the day comes and it’s snowing like crazy in Seattle. Due to the weather and traffic we end up missing the Feeding Clinic but make it for the Neuro appointment. At the end of this appointment I’m told that there is enough information gathered and Ava does in fact need a full autism assessment. At Seattle Children’s Hospital as part of their Neuro assessment, they do a blood draw. The results from the blood draw reveal that Ava has some of the genetic markers that are associated with autism.
After this appointment we are again given resources and direction on how to request and autism assessment through our services in the Bay Area. While still in Seattle I follow through and the earliest we are able to get in for an autism assessment at Regional Center in the Bay Area is June. It’s currently December. The earliest we are able to get in for an appointment at Seattle Children’s was March. I schedule both appointments and request additional services through Regional Center while we wait.
This is when Ava begins Early Intervention services at Lynn Center. We fly back to Seattle for the autism assessment where Ava is initially diagnosed with PDD/NOS (Pervasive Developmental Disability Not Otherwise Specified, the precursor to an actual autism diagnosis) in March of 2008 at the age of 2 ½. I’m not devastated by the news. Through all of my research and talking to as many professionals as I possibly could, I’d known. I’m reassured and comforted by this diagnosis. We are told to come back in when Ava turns 5 so a final assessment can be done.
From the age of 2.5 having the PDD/NOS diagnosis until we return to Seattle when Ava is 5, she has 6 hours of speech a week, goes to her Early Intervention program and we take advantage of any and all services that are available to us and that I can find. Interestingly enough, all of the agencies throughout the Bay Area are not connected and none of them know about each other. More interesting, I received all of the most valuable resources 2 states away from where we live.
The Official Diagnosis
At 5 we return to Seattle Children’s and I’m excited because I know we’ve made so much progress now. Ava’s speaking, not at age level but speaking. She’s receiving services and I can see progress. She’s been working on computers since she was 2 and her technology skills are skyrocketing. I just know everything is going to be OK. But alas, no, everything is not OK. Instead of being “less on the spectrum” we are further on. Ava has been officially diagnosed with autism at the age of 5. Not a death sentence by no means of the imagination but, damn! We were making such progress. Again, I’m given resources and the importance of having specific services as a part of her IEP. I’m a little let down but the reality is, not much changed from the time we went in for the assessment to when we left the appointment. Ava’s the same, but somehow I’m a little wiser and have a really good idea of what all of this means.
Taking on the World
Here we are now only 3 years away from that autism diagnosis. It seems like a lifetime ago. There have been moments when I’ve grieved for the things that Ava could have been. Grieved for where she could currently be. Instead of me just being able to take her to the dentist or to a sleepover like other girls her age, I have to obsess and prepare not only myself but Ava for every little thing we do. Right here right now I live never knowing if she’ll ever be able to function independently enough to go away to college or get married and have a “normal life.” But that’s not what it’s about. It’s not for me or anyone else to determine what “Ava’s Normal” is going to be. That’s for her to decide. That’s the bigger picture.
I don’t have all of the answers and I’m fairly certain I’m not supposed to. What I am solid on is this: Ava is a spectacular little girl that loves the color pink and techno house music (just like her mom). Ava loves making funny faces at you when you call her name. Ava has the most beautiful eye brows of anyone I’ve ever seen. She has beautiful eyes and loves to try to make people laugh. If allowed, Ava will spend every waking hour on her computer looking up new My Little Pony videos on Youtube. I know Ava has shown me more about compassion, commitment, care, wisdom, knowledge and advocacy than I could have ever learned on my own. I also know that Ava doesn’t sleep. She’s very thin and her appetite is very limited. When she’s frustrated, she’s gonna run and you better be quick to catch her. I know that even though she’s 8, developmentally she’s about 5 and you have to watch her like a hawk. I know I’m tired and Ava even more so. I know, at the end of the day, we’re both gonna be alright.
For more information about Autism check out our resources page.
Further questions? Contact Alicia, Ava’s mom.