Sunday, June 29, 2008

Back To Yale

Yale contacted us to see if Leo could participate in a couple of longitudinal studies that required children born in 1998 that had made progress. I am not sure what their criteria was for progress, but the invitation to go made me investigate this possibility of going back to ground zero. Cutting to the chase, Leo officially lost his diagnosis by Yale, the evaluators that originally diagnosed him.

But here is the back story...Yale diagnosed Leo at 24 months, and assessed him two other times (at 3 and 5). I am eternally grateful for their comprehensive testing and detailed lengthy reports. Our springboard to direction, and eventually goals and objectives that would be carried out by various therapists for years.

At our last evaluation, Leo (just turning 5) still met the diagnostic criteria for an ASD. I didn't care so much about that, but what may have been uncovered during this evaluation that would help us hone in on therapy. After all, this was our 3rd year of preschool and I wanted to perfect his program so that he could go to elementary school with as little support as possible. Yale gave us his current deficits which validated our direction and our goals. It wasn't until 6 months after that eval. our therapy team said we need to construct a "fading program". In the midst of litigation and getting our house appraised for selling (so we could afford it all), I wasn't capable of believing anything as crazy as no therapy.

But, it indeed happened a year later. Leo was no longer disabled as far as we could tell. There was nothing left to teach him. He still had struggles (see previous posting), but he was happy and learning with no support. I had to let go of those precious daily records provided by our shadows. I had to let go of knowing that Leo was taken care of.

Interestingly, I routinely got emails from parents, therapists, and teachers, asking me if I ever got an official from a doctor. I said no, that I didn't feel I needed that. I learned to trust myself and the therapy team to decide what Leo needed. It bothered me though, that the skeptics, my "fans" didn't believe that Leo was functioning at this level because I am just a mom saying so. It still blows my mind how educated smart people will only believe traditional doctors.

After a little soul searching, I let go of my desire to prove our outcome . A fight I can never win. A person has to be open and accepting that our kids CAN make dramatic progress, can even recover, when they are given what they need. A person has to look beyond their own experience and their "baggage". I entertained it for a couple weeks though, thinking I could drag Leo out of school and spend five thousand dollars on an evaluation that wouldn't serve in his interest. No thanks. I figured I'd save the money for when he really needed it.

So here I was with an invitation for a free evaluation. What's a mom to do? I weighed the pros and cons.

Pros: 1) A free evaluation that may provide us with deficits that are now apparent 4 years later. 2) It's the right thing to do. 3) Because of Leo's anonymity, I can't shout out to the world what has happened with good ABA and the diet. No hocus pocus. Just the stuff you hear about day after day. I knew telling Yale (I filled out a 10 page form just on his therapy schedules) would be a way to shout. Telling them will go a long way. After all, they are doctors.

Cons: 1) P.T.S.S. for me, exhausting for Leo. 2) I may have to prematurely tell Leo about the label of Autism. That there is a name for all the stuff he knows about himself. Our plan was to wait until he needed to know, taking cues from him. 3) I questioned whether it may be too much to ask of Leo. He may miss a Little League game, he may feel it's so much.

After having long talks with him, he said he wanted to do it. So I prepared for our action-packed two days at Yale. Leo liked the fact he'd get an ITunes gift card for his participation. He did the ADOS and the CELF while I did the ADI and the Vineland. I filled out other measurements - parent and behavior. They were fascinating. I must have filled out almost 20 different surveys on top of all the interviewing. It was exhausting. Leo did an EEG, we both did blood tests.

The first day the evaluators (totally 6 in all including our "handler") seemed aloof and wary. I thought, hmm....scientist personalities or what? I insisted on meeting with our initial evaluator, one of the people that originally diagnosed him. I immediately burst into tears after not feeling teary all day. The meeting was a little forced, Leo didn't remember her, and it was hard because I couldn't talk about Leo since he was with us.

The next day seemed a bit better. I ran into that original evaluator and she seemed more available. I was able to take her aside and share the good news about Leo's functioning level and thank her for all that she's done for us. It was a great conversation, I felt I shared what I felt I needed to say, and I felt like I had some closure. At the end of the day, I got an unanticipated "wrap-up" where the lead evaluator went over her observations. She was very warm and friendly and immediately told me Leo no longer meets the diagnostic criteria for an ASD.

I wasn't surprised by the news but it got me teary. It's not all in my mind or something. I was really shocked because she was able to give me this information when I knew the testing was for their research, not specifically for us. She also told me this is so rare to tell a parent this news. That they regularly tell parents their child still has symptoms of Autism. Their behavior all made sense to me now - they didn't BELIEVE me, they just put up with my high-maintenance requests about anonymity and not using the word Autism around Leo. There was a shift in the air - the entire team seemed very happy.

They also noted that Leo appears to have a visual spacial processing deficit. She wasn't exactly sure what it means yet, but was going to process the testing and consult with the other evaluators. This area tested within the normal range, but with approximately a 20 point deviation away from all his other numbers. This led her to believe there may be an issue. Leo may have non-verbal learning disorder. Or it may be a milder deficit. I'll find out soon when they send my a write-up, another pleasant surprise. I love facts and figures (no surprise, right). They'll have 4 assessments to compare. I won't be thrilled if there's a new disability to learn about - I am already busy working on a new degree in Homeopathy and my endless search for my children's facial tics. But I know I have no place to complain.

For now, there's nothing to do about this deficit. She thinks perhaps high school math may be a problem. I love having this information - I can prepare. If any parent can take away any learning from reading this post, look how valuable it is to have regular assessments done. Expensive, hard to find at times, but the pay-off is exponential.


Anonymous said...

It's just very hard to believe he was autistic to begin with. I really think some kids are misdiagnosed and parents are fooled into believing they are recovered. Just don't buy this at all.

Anonymous said...

Congratulations! I'm so glad you did the followup study. It sounds great and I'm very happy for you.

Maddy said...

I'm stumped for words. Yours was one of the first blogs I ever commented on, however long ago that may have been.

Maybe there's something in the title of your blog afterall. [I'm not being mean, just teasing.]
Very best, best wishes as always

Ashley loves Leo said...

Thanks Maddy for your thoughts. I am always grateful for our connection via our Leos. You are so different from most people I "talk" to online. You are one of the most open, accepting, and non-judgemental people I know.

And the best to you and your lovely boys and girls! I look forward to catching up on your blog soon after I process all my insurance forms and pay bills. What "fun".


Laura said...

The follow up study sounds like it went well! You have the "official" word on Leo's no longer having ASD, and can learn more about whatever this visual processing deficit is at a later time! I had a problem with high school math, myself. :)

We're going to do an evaluation for a study at the UW next month. We'll see how that goes!

Ashley loves Leo said...

Thanks Laura. Exciting that you're going back to UW. Yeah! I can't wait to hear all about what they say. He is doing so well!

Artemisia said...

Hooray Ashley and Leo! I'm so happy. I remember when Boo lost his diagnosis I burst into tears. Here's to both of you!

Funny how they treated you; what kinds of things are they seeing in the study, I wonder? Parents in denial that their kids are still affected?

Ashley loves Leo said...

Thanks Artemisia. It means a lot to have your support and understanding (the very few people out there!)

About the "treatment". I think they were talking about all the parents they see for evals, not for the study. She said they have to tell parents "all the time" that their children still meet dx criteria.

Either way, they were wonderful and I am anxiously awaiting the formal written assessment. I want to get going on the processing issue.