While some may see Cordy at her worst – in a full-out, thrashing, crying meltdown – most now see her in her friendly, happy state: a hyper, smiling four year old, bounding around as if the world was hers alone. A year and a half of therapies have done an amazing job at calming her sensory sensitivities, helping her with coping skills, and teaching her proper social interaction.
And for those who only see her at her best, I often hear the same refrain: “She doesn’t seem like she has autism.”
I understand that it is often said as a compliment. They are trying to say that in the five or ten minutes they’ve observed her, they haven’t seen any signs of a child with any kind of developmental issues. I agree – Cordy has worked so hard to recognize other kids, even asking them to play sometimes.
But now and then, some people go a little too far in their praise. It generally goes something like this: “How did you find out she has autism? Did you actually get a diagnosis? Are you sure?”
Like I’m making this up or something?
Or this: “Autism is such an over-diagnosed condition. Look at her – she’s fine. What kid doesn’t have tantrums or irrational fears? And some 4 year olds aren’t potty trained yet. Just because she’s not a genius doesn’t mean she has autism.”
Ouch.
The truth is, Cordy doesn’t have a medical diagnosis yet, only an educational “classification”. The difference really doesn’t matter at this age. However, any funding for her therapy ends at 6 years old unless she has a medical diagnosis, and so her case worker has set up an appointment with a group of experts to evaluate Cordy in early May.
Because of what people have said to me, I’ve started to wonder if she will even be given a diagnosis. I mean, I’d love to hear that my child is perfectly typical in every way – forget genius, I’d be thrilled to hear average at this point – even if it meant I looked silly for thinking she had some condition that she doesn’t.
But while people may think Cordy acts “normal” (whatever normal may be), they aren’t around her for more than an hour. They don’t notice that over half of what she says is a phrase she’s heard from TV or other people, and that her responses don’t always match what was said to her. They don’t see our behind-the-scenes work. We do a lot of prep before we leave the house, making sure she knows what to expect ahead of time to prevent any surprises and avoid sensory triggers that could lead to a meltdown. And they don’t see how hard she works in her classroom to retrain her entire thought process.
I asked her teacher if I should expect the evaluation to end without a diagnosis. After all, Cordy is the only kid with developmental issues that I’ve ever had, so maybe I’m seeing something that isn’t there. She is certain Cordy will still be diagnosed on the spectrum. Her case worker agrees.
It does feel ridiculous to actually hope for a diagnosis so that her therapy can continue into her school years. But I want her to have every tool possible for a successful future.
I fully expected to have an oddball child when I became a mom. After all, I was the oddball when I was little – smart and teased mercilessly for it. Gifted I was prepared for. Special-needs I was not prepared for. I was prepared for a battle of wits at every turn. I was not prepared for the patience I’d need to talk with a child who can’t read facial expressions, emotions or social cues.
Earlier today I found an excellent post, Ten Things Every Child With Autism Wishes You Knew, and as I read it, my eyes filled with tears. It reminded me to be patient and not expect perfection from Cordy, because no child fits all of the expectations of parents. Just because she’s different doesn’t mean she can’t shine using the strengths she possesses. And the post is an excellent resource for those who may be a little uncertain or even afraid about finding out their child has autism.
When I am once again told “She doesn’t act like she has autism” (because it will be said again), I’ll be able to smile and reply that autism is only one part of who she is, and her strengths outshine her limitations.
Beautiful. I often hear people saying the same thing about my son. They too, don’t see all the extra prep and behavior management that goes on nonstop.
BTW – the ’10 things’ post is also a book – I highly recomend it.
She sounds EXACTLY like she has autism! 🙂
My daughter, at four years old, also quoted t.v. shows. Reading that brought back memories of a time we struggled – but looking back with an almost-13-year-old daughter now, I wish I could see her at four years old again. As slow as parts of the process have seemed as they happened, I feel just like any mom of a middle schooler feels – how did she grow up so fast? When she was four, my friends used to call her the “banshee.” I was in college, and my friends were kind, but stayed their distance – it was just me and her for a long time. Now she’s giving me that teenage thing, that life with mom is boring and I NEVER do the things she wants to do. But I know she’ll outgrow the teenage thing too – only five more years of her childhood left, so I’d appreciate it.
She could have been diagnosed autistic at age three if we’d gone to a doctor who knew. Instead, she was first diagnosed ADHD with ODD and when she wouldn’t sit down at her kindergarten desk her teachers blamed it on the fact that I lived in a trailer and was still in college. She was diagnosed autistic at age seven (and we moved to a better school district!) but I still don’t feel the therapies she needs exist in our area.
The toughest thing about raising an autistic child is ABSOLUTELY the responses of other people. I was told just this week by a person in her afterschool program, “Her autism is getting worse” (no, you fool, that’s called puberty.) No one realizes how hard my daughter tries.
That was beautiful. I think you’ll get the medical diagnosis will little trouble and the services will continue.
I’ve watched children on the Autism spectrum go on to do wonderful things. I have a sneaky suspicion that Cordy will be one of them too. (One found his niche at Sports Illustrated as a fact checker because he remembers every fact and stat he’s ever heard about baseball, football and hockey!)
You’ve done such an amazing job. I’ve truly enjoyed being on this journey with you. 🙂
Two types of people make those kinds of comments: the well-meaners that come across wrong and the passive-aggressive people who take digs at you.
And I can understand how you feel about this whole situation. You don’t want your child to have autism, but you want her to get the help. She’s made such progress over time and you don’t want to backpedal now.
I know of a little boy who has sensory disorder (at the VERY least) but his parents refuse to acknowledge it. They brush it off as him being a boy and getting into trouble. It’s horrible because he truly has something wrong. So I applaud you for getting help for Cordy. She’s an amazing little girl and you’re a great Mommy!
It’s not silly at all to home for a diagnosis. having one has made all the difference for my son to be in the program he’s in.
Having witnessed the testing a couple of times, my response is that from even the little bit you describe about Cordy’s behavior, it sounds like a qualified tester will pick up her autism tendencies without a problem.
We get the same comments about Bub. I’m in kind of the opposite condition to yours: because it’s second nature for me to “manage” Bub the way he needs to be managed, I find it difficult to perceive him as autistic. But to his teacher and E.A., those differences are very real. His kindergarten teacher emphasizes that he’s the only child with autism who has been able to blend into her classroom so seamlessly that she’s never had to explain to the other children why he’s different – but she also sees that he needs constant support to cope with the classroom setting. Other parents, though, have no idea about his diagnosis and are often stunned when I tell them.
I read your link to the article and you know what? Several of those apply to ALL children, regardless of age and developmental ability.
She’s an amazing little girl, and you guys are great parents. I don’t think I could respond to such digs – even the well-meaning ones – with your grace.
Lots of people don’t believe my son has a sensory disorder anymore, either. And I also worry that my child’s progress might, paradoxically, jeopardize his ability to continue to get the therapy he still needs.
It does make me angry when people act like I don’t know what I’m talking about when it comes to my own kid– like I must be a silly overanxious parent with a wrong diagnosis or something. But you know, I just try to tell myself: THAT is how hard he has worked, how hard I have worked, and how far we have come. He can pass for typical now.
And I know how much HARDER you must have worked, and how much HARDER Cordy must be working right now, for her to do the same. My hat, as always, is off to you. I don’t know how you handle the challenges life brings you with such grace.
I was very touched to be privy to just a small part of your journey. Cordy sounds like an amazing child and you an amazing Mom. We love our children with all of our being and give even when we might feel that we haven’t any more to give. I am not a mother of a child with autism, but I am a mother..and I know the joy of seeing my child succeed when all odds were against him. It’s the best feeling in the world.
May Cordy always make you proud. I think she will.
I hear the same stuff over and over about my little one with SPD. Exactly. I’ve given up trying to explain it – I just smile and nod and move on.
I loved that list of ten too, and I sent it to her current and next year’s teachers.
I’m sorry you have to deal with that. They don’t see her, they don’t spend every day with her.
I know what you mean! For some reason a lot of people DON’T want to believe in autism! If a kid is having a great moment and seems to fit right in, people say, “See? He’s fine!” But when a kid is having an awful moment, people tend to say, “He’s just spoiled,” or something like that. I used to babysit for a boy with Aspergers (which I also have) and my family members would say things like, “There’s nothing wrong with Bobby. The only problem he has is that his mother is crazy!” (Well, she WAS a little crazy, but thats beside the point…)
We just got our official diagnosis…..but it’s a lovely ride listening to people tell me about how “autism is so over diagnosed”…..as though it were a fashion.
I guess they mean well, but it’s fairly infuriating.
This is a wonderful post.
I had the very same feelings when Jack was four. The wanting a diagnosis. The people second-guessing me on if he was autistic.
I still have friends who wouldn’t know or guess Jack had autism unless I tell them. I think a lot of it is because people have very specific ideas about what autism is like. And not all autism is like what those ideas are.