But is it autism?

Last Monday was a terrible day for us. We went as a family to Nathan’s fifth-year check-up but the whole system quickly unraveled and morphed into a case study into what happens when your child doesn’t want to focus on the eye test and for some inane reason does *not* want to take off his clothes for the examination, when outside the confines of the doctor’s office, he shifts out of his clothes in nanoseconds. Nathan struggled against me when I tried to take off his clothes, the doctor watched the whole time as he wiggled and clung to his hanes socks and shirt, which is the perfect thing to do in front of someone who can call child protective services.

Nathan’s doctor asked me some more questions about his eating (mostly carbs and cheese; veggies are a U.N. negotiation) and then asked me about how his speech therapy was coming along. I told him about his preschool and daycare teachers and how excellent they have been. The progress Nathan has made since starting in both places in September has been monumental. He still has difficulty with “sl” pronunciations, still says he needs to “sweep.” But he is talking, repeating, mimicking, making jokes, laughing until his whole body reddens and quakes because farts are very funny, especially when his mother protests that he didn’t inherit that from her side of the family.

Then his doctor asked me about his social skills, how he connects with other children. That’s the gray area. He plays well with his daycare friends and comes home with tales about his preschool classmates. But I’ve watched him retreat from a group of other kids, preferring to play by himself rather than join in a game or activity. Even at his own birthday party, instead of dancing with the mouse, he wanted to sit at the table and eat pizza, despite our urging him to join in. I see that. I’ve seen that. But is it autism or is it shyness? Is his speech delay autism? Or is it just what it is: a delay?

I have never considered autism because of Nathan’s emotional charge, how much he tells me he loves me, how much he laughs and plays. But then he has done things like repeat stock phrases when he was younger or become easily overwhelmed by noise and sound. But is that autism?

He suggested that we get him checked for mild autism and that Mike and I would be able to learn some skills to handle Nathan’s obvious impulsiveness. I wasn’t going to argue with him because I really trust this doctor. He’s the third doctor that Nathan has seen and the only one who has treated both of us with kindness.

I took home that information and have been chewing over it since. Where is the line between being five years old and being autistic? What is the difference? I told the doctor this, I’m not a specialist. I’m just a mother who wants her son to be equipped to handle this world and I didn’t say this, but also be able to battle against all the jerks who aren’t understanding. All the marginal people who won’t love him as much as I do, who will stare with their stupid faces as he melts down in the grocery store. Those people who rubberneck and gawk at a little boy being a little boy. I want the best for him. I want him to move through the world without any pain. I would gladly absorb all of that awfulness for him.

And then on Friday I got the referral letter:

I called up the Autism clinic right away and was told very nicely that there was a waiting list. A SIX MONTH WAITING LIST. A six month waiting list of 1,400 children. Well, 1,401 now. So that’s where we are, in limbo, in wait while I hold my son very tightly and repeat until he pushes his mama bear away: I love you, I love you, I love you.

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  1. I can’t believe you have to wait 6 months! Just sitting there with the diagnosis for so long must be difficult.

    Nathan sounds like a smart, sweet little guy.
    -R- recently posted..Breaking The Rules

  2. AAAAAGH. A six-month wait? FOR SERIOUS? That’s beyond ridiculous. Beyond! Are there any other options in terms of places to go or are you stuck with these 1,400 people and the six months? That’s like, how long people wait for an INS interview. Again: AGGGHHHHH.

    This is the part of being a parent that I find not-so-fun: the parts where I think my children might need help and I can’t deliver it immediately with confidence. You’re so right, it’s so difficult to tell how much is just, “He’s five years old, PUH-LEASE.” Add to that the hyperbole surrounding anything Autism these days and it’s like, where does reality start and stop? Who are you supposed to believe?

    My kids are a lot younger than Nathan, but I know that moments like this are in my future. I’m aggravated and annoyed for you (re: the 6 months) but I also know that Nathan is so lucky to have a mother like you that will make great decisions for him. Keep us posted; will be thinking about you.

    A’Dell recently posted..Charlottes Birth Story- Part II

  3. I’m so sorry that you’re going through this. And really sorry to hear about the long wait! That’s awful.

    Email me if you ever need to vent/chat.
    Carrie recently posted..Proximity

  4. I’m sorry you’ve been put in this 6 month limbo. I wish I had some experience I could share that would help alleviate some of your concerns but I have little experience with an autism diagnosis. From all I’ve read, Nathan sounds like a great kid!

  5. I’m so sorry Mona.

    My little sister has aspergers. It was never diagnosed officially when she was younger, it wasn’t a common thing for teachers or doctors to be looking for in the early 90’s. She was labeled instead as different, odd, and slow. Only once she was in High School did we put the pieces together to figure she had very low grade aspergers.

    The aids at elementary school told my mother that she wouldn’t ever graduate from High School.

    Next month I am flying to Eugene, OR to watch my sister graduate from the University of Oregon. She had a scholarship all four years, and after graduation will go on to culinary school, where I have no doubt she’ll become teachers pet and someday open her own restaurant.

    I guess I just wanted you to know that aspergers or even low grade autism is scary, very much so, and it is hard, but it’s so very livable. And even better, if you know about this at 5, he’ll have these supportive amazing people around him that know how to help him become a strong confident little boy that you have always known.

    Thinking of you guys so much right now. Hang in there. Email if you need.
    Ashley, the Accidental Olympian recently posted..FRIDAY PHOTO BOMB

  6. Oh man, Mona! I’m so sorry you are dealing with this and have to wait so freaking long! Is there anywhere else you can go? It is awesome that Nathan has done so well at school and with the speech therapy — and as you mention he seems really social and emotive with YOU guys, which I think speaks volumes. Whether you get a diagnosis of something or another or not he is still the same awesome little guy, and you will always know in your heart what he needs (or doesn’t need). Including perhaps, an ever-expanding repertoire of fart jokes…
    Kristin @ Intrepid Murmurings recently posted..Creating a Living Playhouse- Our Bean Teepee!

  7. I wish this didn’t ring so true, but it does. All of it. My 5 year old is supposed to start school in the fall, too, and I I keep hoping that will help. But I don’t know. I’m hoping it’s just because he’s 5. But I don’t know.

    I hope you get some answers soon.
    C @ Kid Things recently posted..An Inspirational Poster in the Making

  8. You know what I love about this post, other than your OBVIOUS love for your son? The fact that you are asking questions, and not just accepting a diagnosis b/c some doctor *says* so. Maybe he DOES have autism, but maybe, as you said, he’s just a 5 year old boy with some “delays” (whatever the heck that means). All you can do is keep advocating for him w/ his doctors, teachers, specialists, etc. and of course, keep loving on him w/ all that fierce mama bear energy of yours. He’s a LUCKY BOY to have a mama as awesome as you. Many parents (especially those w/ boys) are too quick to accept a doctor’s opinion or diagnosis, or worse, a handful of pills to shove down their kids throats so they’ll “quiet down” or “behave” or “act normal”… when did we become so quick to make what used to be NORMAL BOY BEHAVIOR a DISEASE?

    I’m not saying Autism doesn’t exist. I’m just saying, let’s not be so quick to accept a diagnosis of disease when in fact, there may be nothing really wrong, other than just normal run of the mill development stuff that he will out-grow.

    Meanwhile, we mamas asks lots of questions, we worry, we protect, we love.

    What else can we do?

    You’re my hero Mona! Seriously. XOXO
    Cheryl recently posted..West Seattle for Japan – TODAY!

  9. I know that whatever the diagnosis turns out to be that it won’t change the fact that Nathan is an adorable little boy and that you are an amazing mother. True story.
    Sarah recently posted..Picture That- I love me some random phone pictures

  10. Autism and Aspergers have been very trendy diagnoses the last few years. Like the mid-2000s when everyone thought dogs were an accessory. Not to undercut the gravity of the situation, but I think it bears pointing out. Clearly it’s best to eliminate the possibility than ignore it, and it’s certainly worth consideration, but don’t let it be doomsday too soon!
    (Also, if you’re interested, when I get home and get all my stuff out of storage, I have a DVD of a great aspie documentary I could give to you if you’d like.)
    heather andrews recently posted..A Visit to Cicely- Alaska

  11. Mona, I echo Sarah…Nathan is a sweet boy and it’s obvious you love him so much. And you want to fight for the best for him. I’ll be keeping you guys in my prayers…I can’t believe you have to wait that long. So frustrating.

    I worry about my daughter a little on this too. S is really smart, but she can also be shy in certain situations. She’s very focused on routine, and I’m not sure if this is age, temperament, or signs of autism spectrum. The other week, she took to flipping light switches on and off, which kind of freaked me out, as I’ve seen my friend’s autistic son obsess over light switches. But at the same time, my husband is the kind of person who likes to take things apart and figure out exactly how they work, so maybe she’s just taking after Daddy? I don’t know. She’s so loving and talkative at home, and she is loving to her teachers, but she tends to be pretty quiet at school. I know she plays with the other kids, but they’ve also told me she sometimes likes to sit and look at books rather than join in. But my husband and I both like to read, and my husband, who is an introvert, would much rather read than go to a party or socialize in large groups! So I can’t tell if her behavior is just her nature and she’s different than me because she’s like J or if it really is something else. Most days, I chalk it up to personality, but sometimes I wonder. Hang in there.
    Glam-O-Mommy recently posted..Every Day Is Mothers Day to Me

  12. I am thankful that they hadn’t invented an Asperger’s spectrum when I was a kid (or maybe they did, and we just didn’t buy into it, I don’t know). In any event perhaps it isn’t autism at all but merely that he’s brilliant, and no doubt in twenty years when they are doing a human interest story on you and you bring out those old photos of Nathan and TJ playing with their toy rockets in the park and tearfully proclaim to the journalist how very proud you are of your son, he will receive the broadcast at a slight delay in his space capsule and redden slightly before resuming his search for helium-3 deposits on the Moon. Or, you know, something to that effect.

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