Embracing the Diagnosis

So Rex is Autistic.

Wow. I totally just said it out loud, on my blog, for the first time. You have no idea how many times I’ve sat down in the last two months and tried to formulate something that boils down to these three little words: Rex has Autism.

“Hi Ms. Valentine,” the school psychologist said one obnoxiously sunny day in October, “Do you think you could come in this week so we can go over Rex’s IEP results?”

Rex has had an IEP since he first started public school, but the move Nevada required a full accounting and some of their own tests.

No problem, great, I’d love to come in and talk about Rex. He is doing amazingly well, he loves 3rd grade and his reading and writing have progressed in leaps and bounds. Of all my kids, he has probably made the smoothest transition from Germany.

I sat across from the school psychologist and happily leaned in to visit, thinking this was an easy review and I’d be out in a flash.

“So, isn’t Rex doing great?” I said.

“Well, he is doing great. He’s an amazing kid, I’ve spent a lot of time reviewing his IEP this past month and talking to his teachers…”

“Yeah, they send great notes home and he’s just flying along,” I said. CLUELESS.

“Yes…um…his testing was very extensive in Germany and they really did a thorough job,” she said.

“I know, we had an awesome group working with us there.” Still not picking up on her body language, tone of voice, hesitancy. She continued.

“Well, I really think…I mean, after talking to his teachers and his speech therapist…well, we really think Rex is Autistic.”


What?  “What?” I kid you not, my tongue went numb and my throat started to close. I felt like I’d been popped in the nose.

“We’ve been observing him and I feel like we need to run a few more tests, with your permission of course.”

“Wait, I don’t understand,” I said, trying not to throw my shoe at her head, “We have had him tested–repeatedly–since he was five-years-old. Specialists, amazing developmental psychologists…you are telling me that every single one of them missed this? That you’re seeing something different?”

She then went on to explain that while they had tested him more than once for Autism, many of the symptoms don’t really test out until after the age of eight or nine. For example, you can tell a six-year-old, “It’s raining cats and dogs,” and they’ll look confused because they don’t get it. But a nine-year-old isn’t that literal. They pick up on social cues and know instinctively when a person is joking.

Rex misses those things. Completely. Tingling sensations started in my legs and my head felt abnormally heavy on my shoulders. She continued to talk.

For a moment all I could hear was one thing: your boy is broken. He’s not progressing, he’s not catching up, he’s not like the other kids. It’s not just quirkiness and anxiety, he doesn’t work right and he’ll never work right and you can’t fix this and and and and…

It is a very humbling moment for a parent, the moment when you choose to step out of the protective emotional bubble you have so carefully created and really listen to what someone is trying to tell you. Something that had worried me and bothered me even though so many great doctors had ruled it out. Were they all wrong? Was I fooling myself?

I was alone, Jason was on the East Coast, no family and no friends to lean on, I felt like the weight of Rex’s diagnosis was resting on my shoulders. For ten seconds I considered leaving. Just walking out, refusing to speak to this woman who had the nerve to suggest that my child–

“Okay. What do I need to do? If you think it’s possible then let’s run the tests. Can we start now?”

It was the hardest thing I have ever said in my entire life.

Suffice it to say, by the time we were done with the first test (it was given verbally and demanded that I really consider some of the tiny clues I had so conveniently glossed over in my mind) I knew. I knew it, I knew what the other tests would say, I knew that even though he was the exact same boy he’d been when I walked into the meeting, I was changed.

I sat in my car and couldn’t even leave the parking lot. I called a girlfriend and she let me cry really ugly for a long time. Gah, I can hardly write this because it makes my throat tight. I can just see that beautiful blond boy of mine who loves to, “spend alone time,” with his Terrarium. He’s so charming and so delighted by the simplest things. He’s bright and kind and thoughtful, he worries about me and his stuffed animals alike and loves alliterations…

And he’s Autistic.

It didn’t take long for our reaction to his diagnosis (Jason’s was very positive and amounted to total relief) to click into place with a sense of rightness. You don’t know how liberating a diagnosis can be until you finally have one and decide to embrace it. No more worries about his animal obsession, his food anxieties, his social oddities or his complete inability to tell when his dad is teasing him. It explains so many things.

My boy is autistic and that knowledge has changed our life.



  1. Coming from a special Ed teacher, our hearts break along with you. But, it gets better. Continue advocating for your kiddo- continue to love him for who he is. He’s an amazing little boy.

  2. Heather T says:

    Big hugs sent your way. We love Rex. He is the most caring and genuine kid I know.

  3. I have been in that chair. And I have to say I did not handle it as gracefully as you did. It took me a whole year before I would accept it. Because we, like you, had done previous tests and seen psychologists who said differently, said that Jona was just developmentally delayed so I wouldn’t listen to what the school occupational therapist and principal was trying to tell me. When we finally got the official diagnosis I was in a place where I could accept it, and like you, it felt right.
    I just want you do know that you have a very special young boy there and the blessings that come from having him will be many and varied. Sometimes it won’t feel like a blessing but when you are able to look back you will be able to see that it truly is.
    Having Jona has made me a much better person and a better mom. Jona just finished up a service mission for the LDS church and will be speaking in sacrament on Sunday. He wants to continue in schooling.
    We knew Jona was amazing and special but it was when Jona received his patriarchal blessing we were able to glimpse just a tiny bit of how truly amazing and giant his spirit is. Your Rex is also a very special spirit. Take that and wrap it around your family. I know that you love him so much already. You guys have a beautiful, difficult and amazing journey ahead of you. If you ever need to talk you can email me any time. Much love.

  4. I don’t know exactly what to say, other than that here’s a virtual hug for you.

  5. The relief of a diagnosis must make you feel lighter and heavier all at the same time. I’m impressed that you’re being so fast-acting — jumping on the tests when you’d rather not. My heart goes out to you for all the emotions you now have to go through.

  6. I’m so very sorry. We are going through some testing with my daughter right now. Today we were told some news that is very hard to accept. I’m struggling but will be glad once we have an actual diagnosis and I can learn the best way to deal with making her life better. You and your family will be in my prayers. Thank you for sharing… I needed to read this today.

  7. Rex is still Rex. It is just your perspective that has changed. Also, I am a firm believer that everyone is on the spectrum. We all have autistic tendencies as kids that we have to overcome. The diagnosis is a good starting point though. Like GI Joe, knowing is half the battle.

    Jen and I have two autistic sons and they are amazing kids! It takes a ton of work with socialization, medication (that alone will be a great blog post one day), patience, love, etc. etc. But there is light at the end of the tunnel. Our oldest son is 15– he programs like a wizard, is in HS plays, does his own laundry, looks people in the eye, shakes hands, gives great talks and lessons at church, can carry on a pretty good conversation (although it is still a little one-sided sometimes on subjects that I’m not smart enough to comprehend– still a few social cues that he needs to work on), loves the scriptures, etc. etc. Jenni is an expert on this if you want to call her sometime… She just about punched the mom of an autistic boy that picked out our eldest son’s autism in nursery.

    About medications, we went the rounds on this– that is probably the hardest decision to make. We tried everything first (both sons struggled like crazy in school– 4 hours on math homework was fairly normal). Finally, we were at our wit’s end and gave in (vyvanse doesn’t stay in the system very long, so we thought we’d just try it out on our pediatrician’s recommendation). Vyvanse mixes with pretty much anything and is tasteless and odorless (much like iocane powder) so there are no pills to swallow. I’ll tell you, once they were on Vyvanse they were a lot happier and they felt like they could concentrate, keep up, excel, etc. I’ve read a few things that use of medications like Vyvanse can actually help re-wire the brain and help kids become a lot more high-functioning… It worked for our oldest and the jury is still out on our 11 year old, but it seems to be helping. We had to overcome a huge stigma about medicating our sons, but it was the best choice for them and we were out of options. The oldest one now only takes it when he needs it, which is getting more and more rare. The youngest will still generate calls from teachers and assistants at school if he doesn’t take it… He gets really frustrated too when he forgets (or we forget). He recognizes that it really helps him– all of us would rather that he burns through his homework in 20 minutes rather than 4 hours since there are a lot fewer tears and frustrations for all involved… The only downside is that it is though for them to sleep if it is taken after 6:30am…

    Anyway, if you’d like to chat (again, Jenni is the expert– I give all of the credit to her for any success the boys have had) feel free to email me and I’ll pass along her number. Knowledge is power and it takes away a lot of the anxiety, uncertainty, etc. Plus there are a lot of directions that you might be pushed that aren’t necessarily “best practice” by well meaning teachers, etc.

    Love you both– we really need to hang out.

  8. Catherine Carlson says:

    Random note from a stranger, although you do know my sister Allison. If you are ever in need of an alternative to public school for Rex, this is a great private school for kids just like him in the Las Vegas area. http://wcenrichmentacademy.com
    Keep it in mind. It really has done exceptional things for both of my nephews.