Rewind: The Autism Evaluation Process

Another retrospective post in order to shed some light on how we got here...

So I've caught you up on how I knew something was wrong and how I decided that I wanted him evaluated...well...then what?

Finding the right place for his evaluation
I work for a large nationally acclaimed hospital that has a huge autism/developmental pediatrics department. Naturally, that was where I would have Kellen evaluated, right? I had a hard time digesting the fact that there was potentially a few month's long wait list to be seen, but when I was told that the current waiting time for evaluation was ONE YEAR...well I can't remember if I cried, cursed, or drank (oh please, that's easy, I did all three). No amount of complaining, string pulling, favor calling was going to help that because #1 an eval is not like sneaking in for a quick ENT appt and #2 all of those people on that waiting list were people just like me, who had been waiting a lot longer, and you know what, it just wasn't fair to jump ahead.

Thankfully about the same time, Patrick spoke with some colleagues at school and they recommended another independent center. I don't want to list places here, but if you'd like to know where, then contact me via email, message, facebook, etc. and I will happily share our story (and center contact info, etc.).

I put our name on the waiting list of both places the first week in May. The last week in May I got a call from the independent center that a couple of appts had opened up and we could be seen the following week...our eval process would most likely be completed by the end of June...less than 2 months from my first call to them. It's October, 5 months since I called...I'm still waiting to hear from my hospital...

Appointment #1: Initial Intake Interview
This appointment was hard to prep for...the thought of having to walk into a center like that. Patrick met me there with KK, and I remember sitting in the waiting room looking out the window, waiting for them to get there. And I had a thought that has stayed with me the past few weeks....at that exact moment...mothers everywhere were sitting in waiting rooms...the waiting room of the emergency room...of the cancer center...of the funeral home. I would take sitting in that waiting room over any of those other options, I would be grateful for my son who I know loves me, who I know needs me, who I hope and pray I have decades with. So I sucked it up and put on my scientist mode as we began the interview process.

We met with a psychologist who asked all the usual questions, listened to our greatest concerns, and walked us through what the arena assessment would be like the following day all while Kellen proceeded to destroy her office (apparently her office was made for that, she had bins of toys, but Kellen still managed to knock a table over on that poor woman's foot...LOL!). This was not an appt to get any potential diagnosis, just an appt to set the stage for the following day, let us know what to expect, for her to get to know him to try to help him the following day (he loves cars, he doesn't talk at all, he's not generally afraid of new people or closed spaces, he really likes cars...). But she said a couple of things "Does he usually walk on his toes like he is now?", "Are those guttural sounds typical for his speech pattern?" To which my inner monologue said "Toes? He doesn't walk on his...does he...is he....well he's just tentative right now because he's someplace new, he doesn't usually do that...I don't think...crap, I don't know...and those sounds, well that's just KK, he makes silly sounds, why is there something wrong with that?" I don't think I said any of that, I think I just looked like a deer in headlights while thinking 1) she thinks he's autistic and 2) she's a psychologist so she's currently evaluating my reaction to the questions she's asking and I hope she doesn't think I'm crazy or defensive or in denial (I may be/have been all three...).

We left that day with an idea of what to expect the following day...and I tried not to freak out for the next 24 hours. What did I want from the assessment? An answer...I still held out hope (a lot of hope) that they would tell me what everyone else was..."Oh he's just a boy with a chatty older sister, a late bloomer, we don't see enough to classify him as autistic, he'll just grow out of it..." I hoped to hear that, but I think I always knew I wouldn't...so then I just wanted confirmation, I needed to hear the words, and I couldn't move on until that happened.

Appointment #2: Arena Assessment
This was the appointment I dreaded. I dreaded that we were going to walk in this room and have multiple people evaluating my son's every move, and I dreaded even more that it would be weeks after that appointment that we would actually discover the outcome...but it didn't actually happen that way. An arena assessment allows multiple therapists/specialists to perform simultaneous evaluations. I can't even remember how many evaluation tools they ended up performing, but it was beyond thorough. We had one person interviewing us while observing Kellen's responses/reactions to the various trials they were putting him through. She was someone who had been doing this for 20-30 years, so she knew what she was looking for, knew what she was seeing, knew what to ask us.

It's a hard thing to sit there and answer questions while you're simultaneously trying to watch your son to see if he's reacting appropriately, doing as well as you know he can. And then you're watching them to see how they're reacting to his reactions...good, bad, confused, someone tell me something!

He walked in that room and charmed them...that boy is his daddy through and through...he was cute as can be, and I thought he was doing well. One of the evaluation team members actually favors me quite a bit, and he went over and grabbed her hand to get her help with something, then did a double take and realized that I was across the room and ran over, everyone thought it was the cutest thing ever. He had one tantrum, but nothing too major. He ran into a door in the play kitchen (leaving a pretty angry red mark on his cheek) and it didn't phase him (oh crap!). He started losing it over the lack of juice/snacks (oh crap!). He was playing and ignoring most of what they were asking him to (well, that's pretty typical KK).

And so you sit there worrying about what they're thinking of him, and then worrying about what they're thinking of your reaction to the situation (they're therapists after all!). The team was just great, and in the end, they said they would compile all of their results and let us know the final diagnosis, but the most senior evaluator basically laid it all out at that moment. She said that she felt like "a diagnosis on the autism spectrum would most likely be appropriate". I remember that moment...because I wasn't expecting it. It was just the assessment, we weren't told we would even be provided with a tentative idea much less a point blank, "He is". It felt like the wind was knocked out of me, but I was grateful. After that cat was out of the bag, all of the team kept saying he had so many strengths, and that he would most likely be extremely high functioning. But I think I stopped listening somewhere along the way. They decided they'd like to perform an additional evaluation in his daycare setting. We smiled, collected our happy toddler, and left with a plan for follow-up, knowing we'd get the formal feedback session in a few weeks...
I turned 35 the next day...

Appointment #2.5: Daycare Evaluation
No surprise and no need to go into detail...they saw what I saw...it only contributed to what they'd already seen in the arena assessment.

Appointment #3: D-Day
Diagnosis day. My parents took the kids for a couple of days, so Patrick picked me up for the appt, which was at the end of the day. We walked into the office where the team was already assembled around a round table. There was folder placed in front of each seat, and in the center of the table, sat a box of Kleenex. I proceeded to stare down that box of Kleenex repeatedly over the next hour...there it sat, willing me to cry, telling me it was okay to cry, expecting me to cry because everyone did...but I refused to do it.

Pages and pages of data from the various evaluation tools...each one suggesting the same conclusion...so finally we turned the page and we saw it...and they said it. Kellen met the full criteria for a diagnosis of autism. I sat there and nodded, acting unsurprised, being the most stoic I may have ever been in my entire life.

Screw you Kleenex I'm not crying. I'd break down in rivers of tears everytime we got bad news while trying to have a baby. I would be overcome with agony and emotion and despair and could not hold it back...but that was then. I had survived that, and I had a gorgeous daughter and amazing son...and they needed me to be strong...and that I could do...for them.

So I sat there and listened to all of the results, all of the recommendations, all of the potential strategies...and I did not shed a single tear. I didn't cry because my heart already knew. I didn't cry because my son was autistic not dead. I didn't cry because he needed me to someday tell him the story of how we found out and I wanted him to know that I could handle it, that we could handle it, that he could handle it.

In the end, they went on and on about how many strengths he had. Physically he's amazing. He has so much potential. They called it his baseline evaluation because it was pre-intervention. He's supposed to be evaluated annually...and while I don't know what "normal progress" is, it gives us something to work toward...something to dread/look forward to...because I will be whatever he needs.

I will be strong for him, I will endure his meltdowns, I will keep searching for what might help him, I will not give up on him...because someday next summer we'll walk into another assessment...and I will not cry.

Patrick and I went to a wine bar after the assessment. It was a nice evening, we enjoyed some good wine, a nice atmosphere, and we digested. We didn't sit and feel sorry for ourselves...we talked about what we wanted to do next, and how much we knew that he would be okay. I don't think I really cried until the next day...when we went to get them from my parents. The moment I had him in my arms, the waterfall came. I needed him in my arms for it to feel real. But I dried my eyes, sucked it up, and I started us all on this journey...thanks for coming along.