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Congratulations, You’re Cured!

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Perhaps you’ve noticed my conspicuous absence the last week.  Or maybe you didn’t notice at all (asshole).  Either way, it’s because I’ve been mulling things over.  The mulling of anything is never good, by the way.  It’s a known fact that “mulling” is a completely useless expenditure of time.

I’ve been mulling autism, which is a pretty big chunk of meat to mull.  You see,  our ABA therapy with Drew, the grad student, ended last week.  I realize many people would be concerned that the hallmark of autism treatment was coming to an end, but I was feeling quite relieved.  Not only was I getting my schedule back to normal, and would no longer have appointments 6 days each week, I also wasn’t completely convinced that it was helping.

What!?  ABA helps everyone with autism!  Well guess what, with my child, the technique seemed to produce more anxiety and an escalation of behavior much of the time (see my post about holding the demand).  There were some useful tools that we walked away with, but I wouldn’t say that the entire approach worked for Connor.

In addition, a couple of weeks ago we forced a medication change, and saw dramatic results.  Connor is much more pleasant and cooperative than he’s been in a year.  However, since this coincides with the end of ABA, there were some unexpected results.

During our final meeting with Drew, he brought over some questionnaires for us to complete with him.  One of them was the CARS (Childhood Autism Rating Scale), which measures “symptom severity through quantifiable ratings based on direct observation.”  We completed it together and Drew tallied up the results to share with us before leaving.

The results?  Connor doesn’t have autism.  Nope, not even mild.  He’s cured!!  It’s a miracle!!!!!

But he still struggles with reading and writing, and doesn’t like to get his hands dirty, and doesn’t like the sound of the vacuum, and doesn’t understand metaphors, and is very literal.

Of course, he’s never fit any particular category very well.  Except for ADHD, that one REALLY fits.  But as for the rest, it’s always been mild and very hard to define.  This makes it really hard to decide what services he needs.

Don’t get me wrong, I’m not complaining.  There are so many kids that have it much harder, with greater challenges.  I get that.  But even though whatever “disorder” he has is mild, it is still a challenge.  Especially when you can’t define it.

Autism?  Asperger’s?

Who knows.

And what will I blog about if there are no autism shenanigans?  Maybe I will have to start a whole new blog that consists of really bad drawings.

Hmmm, on second thought…

If it’s not autism, then we also stand to lose out on some other great perks:

1.  We won’t get to attend the annual Autism Picnic, where Connor gets to look like a shining beacon of model behavior.

2.  I will have to admit to my mother that she was right all those times she said, “there’s nothing wrong with him, he’s just an active boy.”

3.  We will lose our rightful claim to the coveted Disney Fast Pass, and will be stuck waiting in long lines with the NT kids.

4.  We won’t have any excuse to avoid “playdates” with other kids, other than the fact that I don’t so much like other kids.

5.  Instead of blaming his eccentricities on autism, I’ll just have to admit that he’s weird.  He got that from his dad.

But I remind myself that this is a spectrum, and I’m sure my child falls somewhere on it, if only at the mild end.  So I haven’t quite decided to hang up my “closed” sign yet, but will see what I can possibly find to write about now that my child is “cured”

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

11 responses »

  1. I had a somewhat similar experience with Julia. One evaluator said she placed off the spectrum, but her Dev. Ped, OT, SLP, and ME say..not so much. 🙂

    Our approach is to get her what she needs, regardless of what they want to call it today. PDD-NOS? Ok..

    (((hugs)))

    I know it’s weird and frustrating.

    Reply
  2. I have only run in to one woman who said her son “lost the diagnosis” and I wondered what that meant. I’m happy for Connor in a way – this means he has something “milder” (?) than autism. I’m with Laura – to get all the services needed, regardless of what it is called (but a nagging little voice inside me says – get a second opinion – just to be sure). xoxo

    Reply
  3. I totally understand how you are feeling right now. I felt the same way when Mad was in the process of being diagnosed. He seemed like he was on the spectrum, the evaluations said he was, but he would do.. whatever.. he was doing at the time, and therefore he WASN’T on the spectrum. It was absurd. If he was on the spectrum before, then he probably still is now. The medication is just doing what it is supposed to do, help him remain calm and focused.
    It just really fries my butt when they do this stuff.

    One thing I can tell you, even if they officially decide he is magically cured, you belong here with us, if this is where you want to be. Always. Autism diagnosis or not.

    Reply
  4. What a load of crap—the cured part—they came close to telling me that and I went up their asshole and out their mouth. See, when you work every single day 24/7, for years with your child, you see results. They were seeing results and *POOF* it went away. Baloney.

    Your son has made HUGE strides and he has you to thank for that. That’s what they’re seeing. Add to it the right medicaton and you have a “cured” little boy.

    I don’t mean to sound all preachy and weird, its just that I know how good of a mom you are and that’s what they’re seeing. And yeah, you will always have a place here. I can feed you information privately if you need stuff to blog about. 😉 I’m good like that. 🙂

    Reply
  5. Autism or no autism, you must keep blogging. I just found your blog last week, and I like it a lot, so there’s no choice in this matter.

    Reply
  6. This is the problem with autism diagnoses–they’re all based on behaviors, rather than your child’s actual challenges and experiences.

    All children learn and grow. I did, without ABA or anything else. So now, I can articulate my needs without a meltdown. I can look people in the eye if I want to. I can speak neurotypical. I can stim on my own time. Does that mean I’m not autistic? It’s absurd. Of course, I’m autistic.

    It takes a tremendous amount of work for me to find my way through the sensory world. Eye contact is a huge strain. I can’t walk into a room full of people and last very long, because the auditory overload is so strong. I don’t read nonverbals, and I don’t modulate conversations with them. So I adapt. Does that adaptation mean I no longer have the disability? ALL disabled people adapt. It’s the way we live happy and fulfilled lives. It doesn’t mean that the disability goes away.

    I love Lizbeth’s comment: “What a load of crap—the cured part—they came close to telling me that and I went up their asshole and out their mouth.” That would be pretty much my response if someone told me I’d “lost my diagnosis.” It’s completely invalidating. It’s as though they’re saying, “We’ve cured the symptoms, so you no longer have the condition.” Such chutzpah.

    Reply
  7. The loss of the playdate excuse would break my heart.

    Lucky for me, Owen can only play well with his other Deaf friends, and their Mothers happen to be as cool as I am.

    Reply
  8. No matter the official “diagnosis” THIS week… You’re still a mom. You deal with the everyday stresses and joys of life, marriage and child rearing, plus a whole bunch of other stuff (because he’s just wierd and over active – NOT!). Your blog is not only humorous, but a lovely insight into your world. I truly enjoy it. Except for the crappy drawings. Come on already! Take a class or something. HA HA Just teasing…

    Love you!

    Reply
  9. I am autistic though I pass all sorts of silly tests as neurotypical (and I think the Baron-Cohen test is VERY silly and based on his idea of a stereotypical MAN with his idea of Asperger’s – emphasis on the word “man” because I am a woman).

    I am grown. I have learned. That does not alter the way my brain is wired. Your son has been in intensive therapy. He is bright. He has learned. That does not alter the way his brain is wired. Defaults will always be autistic, it is simply that people are more complicated that disorders that can for now only be diagnosed based on behaviors.

    Reply
  10. It’s crazy how we just want our special guys to be normal, then when someone says they might be we freak out! What a lifestyle change it would be! Like the one we went through when they were diagnosed. But that’s right, they’ll always be quirky. Sounds like you guy has some SPD issues like mine does. We get NO services for that, so good luck there.

    All that being said, congrats on the positive changes. I am very jealous. My son is rarely pleasant or cooperative as you describe yours. Maybe we need to look into some meds…

    Reply
  11. This reminds me of all the times I hobble into a place I normally take my wheelchair, using only my cane (usually because my arms are simply way worse than my legs on that particular day or I’m too fatigued to manage to get my chair out of the car), and 3 or 4 people come up to me and exclaim “Oh! You’re doing so much better! Look, you’re walking!!”

    If I weren’t so fatigued, and my balance weren’t so bad, and I didn’t like these people under normal circumstances, I would beat them with my cane.

    Reply

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