sad lamb

As I sit here at a desk awash in paperwork for various doctors, I’m overwhelmed for a brief moment and tears start stinging my eyes.  Pull it together, get a move on, and do what I need to do – fight through yet another phone tree in an attempt to talk to a human and plead my son’s case.

How did it come to this?

We’ve finally reached that pivotal moment – the one where you finally have to admit there’s something wrong.  That something is seriously wrong, and we need to figure it out fast before someone gets hurt.

For years – the last two, to be precise, we’ve asked doctors to figure out what’s going on.  We’ve gotten the brush off: “oh, it’s just a stage, he’ll outgrow it.”  We’ve gotten the blank looks:  “what do you mean?  He’s making eye contact, it’s probably just ADHD.”  We’ve gotten complete cluelessness: “have you tried a different discipline method?”

There’s a point of hopelessness before the diagnosis is finally pinned down.  We’re there.  We’ve been there for a while, but lately things have gotten really bad.  We want answers.  Something!  Not another clueless comment or blatant judgement.

We don’t have a formal diagnosis, but we’re staring down a distinct possibility that frankly, has me really scared.  When your kid fits every criteria and then some, do you really need an expert to verify it?  (yes, we do – we need that stupid paperwork that will get the school system off their “let him fail first” butts and make them offer services.)

Why is it that the “experts” tend to ignore our kid until he’s school age?  The Engineer is 5.  Barely school age, but suddenly the doctors are taking the meltdowns and defiance a little more seriously.  It’s not new, goodness no!  It has gotten worse, but this is the same kid, the same behaviours, that we’ve been dealing with for the last year.

We’ve danced around the autism spectrum disorder diagnosis (ASD) for a while but multiple doctors keep saying that it’s not a good fit.  He’s borderline.  But he makes eye contact, doesn’t fixate on things, and does ok socially.  That’s not autism, right?

Yes and no.  Turns out there’s a subset of ASD that’s called PDA.  Pathological Demand Avoidance syndrome.

It’s a fairly new diagnosis with no good research behind it here in the states.  The UK has recognized it for a while so that’s where I’ve gotten most of my information.  It’s anxiety based – PDA kids will trigger off of practically anything that sets off their anxiety.

No cure.  No treatment.  No hope for any improvement. It’s a bleak, bleak future staring me down right now.

2e – Fighting for a Diagnosis
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13 thoughts on “2e – Fighting for a Diagnosis

  • August 11, 2016 at 7:11 pm

    While my two DDs are not 2E, we have a handful of challenges of our own. (both REALLY early readers, some extreme sensitivities etc) I can completely relate to the challenges of dealing with doctors. For us, and many of the people in our homeschooling groups who have similar stories to yours, homeschooling has been the answer. Your story really hits my heart.

    Just know that you are not alone. There are MANY other people dealing with the same issues you are. I’ve found just having others with the same challenges to speak with makes a world of difference. If you can locate a local group through google, that may be helpful. They tend to know the ins and outs of the medical and education systems.

  • July 3, 2016 at 9:08 pm

    You’re not alone!!!
    We worked with the school for YEARS trying to get a diagnosis. A lot of parenting advice and criticism later, we went through our insurance to get a dx…which didn’t help. The therapy options that opened up just weren’t appropriate. 🙁
    We need better support, preferably focused on a child’s individual needs rather than a specific label. Good luck!!! Hang in there.

  • July 3, 2016 at 7:24 pm

    Maybe this is stupid, but on the off chance it’s not, I will offer that I know some kids with anxiety issues who use inositol to good effect. I’ve seen 600 daily for kids around that age. Also, maybe check if he tosses a lot in his sleep. Bad sleep mimics LOTS of different issues. Again, you probably don’t want/need unsolicited advice, but perhaps maybe it will help, so I toss it out there.

    Good luck.

    • July 3, 2016 at 7:54 pm

      Not stupid at all! We’re having him evaluated by a sleep specialist, so hopefully that will give us some answers. Thank you for your suggestions!

  • July 3, 2016 at 3:55 pm

    Just went through this with my now 12 year old. Since he was in kinder I was asking if something was off. Got the testing back and he was diagnosed highly gifted, dyslexic, ADHD, and on the low end of the spectrum. But I heard all of the same things. “he makes eye contact”, “he’s just being a boy” . It did take him failing this year and moving to yet another new school, as his previous school just wanted to punish him for any and all behaviors. So long story short I cried when I read this, then I felt a little glimpse of hope when I saw your son’s age. Hoping you can get the help for your son now.

    • July 3, 2016 at 5:36 pm

      Thank you for offering hope! If you don’t mind sharing, which test did they do? So far our doctors are just observing him, which isn’t helpful.

  • July 3, 2016 at 5:57 am

    “We’ve danced around the autism spectrum disorder diagnosis (ASD) for a while but multiple doctors keep saying that it’s not a good fit. He’s borderline. But he makes eye contact, doesn’t fixate on things, and does ok socially. That’s not autism, right?”

    Actually, it could very well still be autism. Autism used to be diagnosed by behaviors, but we’re learning a lot more about neuroscience and about the breadth and depth of what ASD can look like and what it actually is (different wiring that manifests differently in each person). I’d highly recommend reading Steve Silberman’s NeuroTribes for a really good perspective on autism and on the history and context of diagnosis. <3

    • July 3, 2016 at 5:10 pm

      Thank you for the resource, I’ll have to find and read it. We know the wires are crossed somewhere, it’s just a matter of figuring out what diagnosis it falls under. And finding a doctor with a clue… sheesh

  • June 30, 2016 at 2:51 am

    I hate to “like” this but I wanted to show some support. I can’t imagine what you are going through. And how frustrated you must feel. My heart goes out to you and your family.

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