Schrödinger’s Autism

It’s already a few days into May, and I cannot believe how much time has passed since my last post. So much has happened around here that it’s been hard to keep up.

Beginning in March, we had our youngest son, C, engage in a neuropsychological evaluation. This evaluation took place over several appointments and several weeks. First, the parent(s) meet with the doctor to discuss the situation. What are the parents’ concerns? What kinds of issues are they aware of? What do they hope to gain from an evaluation? That kind of thing. There is no set limit or plan to this appointment– just whatever it takes to get the doctor and parent on the same page. My appointment with the doctor lasted 3 hours! We had a lot to discuss.

Now, maybe every doctor is different, but for us, the doctor spread the evaluation out over two 4-hour appointments, on 2 different days, and 2 different weeks. This is helpful when dealing with children because these tests are exhausting! We went into this evaluation with the following existing information regarding C, based on previous evaluations:

  • He has ADHD
  • He has ODD
  • He has Sensory Processing issues
  • He is a Toe Walker
  • He has not qualified for an autism diagnosis because he is “too social”
  • He is considered Gifted and has been previously identified as a 2E child
  • He seems to have anxiety
  • He has a brain-gut disconnection
  • We don’t have a full picture of what we were dealing with

Our first session started out pretty good. C had a good starting rapport with the doctor, and we got down to business. I was concerned that the time frame was going to be a bit long for C’s attention span and compliance but, I assumed the doctor knew what she was doing. After only 20 minutes, C has a complete meltdown. He is crying, begging to go home. Saying he can’t do this anymore. We tried lots of different things to gain compliance. Most of the time, I couldn’t even be in the room with them during testing because, while I am a comfort and support for C, I’m also an instigator, and he reacts with more outbursts I’m around. We managed, with snacks, bribes and bathroom breaks to get through several, but not all, of the planned tests. C was emotional and exhausted. This set the bar of expectations low for the next several days.

On the next evaluation day, E also came with us. C cried the entire 45-minute drive to the office and dragged his feet all the way into the building. E and I waited in the lobby, and C managed to do well through the first half of things, despite the rough start. When it was time to finish our snack break and start again, he had another meltdown. E and I sat in the lobby for quite some time, listening to C cry and feel bad about himself and be difficult for the doctor. Finally, E gets up and offers to help. E was able to help break through the emotions, and help C finish his assessment. It’s amazing how well C responds to E when in this mood.

Then came the wait (I hate waiting). We wouldn’t get the results for several weeks since the doctor needed time to review the results and form a report. This doctor also contacted the occupational therapist that we take C to to get another impression of C in daily life. We homeschool both boys, which many do not understand or agree with. Doctors are among that group, especially with the issues our boys deal with on the social scale. Due to the absence of additional outside input from say, a school teacher, it makes a diagnosis even harder to reach.

Meanwhile, we are struggling to help C get through his daily routine with as little conflict as possible. Being the mom that I am, I need to know what I’m dealing with. So, I do a lot of research and read books and scan Pinterest, all in search of some trick, tip or tool that might make the difference. I try to learn about each boy’s individual needs and what works best for those needs.

During this long waiting process, which started way before the actual evaluation (talking with the pediatrician, waiting for a referral, waiting for a call back, waiting for that first appointment), I was doing my own research. I came across an interesting article that linked me to all kinds of information on something referred to as PDA or Pathological Demand Avoidance. The bare bones definition of PDA is that it’s basically high-functioning autism with extreme anxiety and demand avoidance. Demand avoidance is a condition where the person avoids any demand placed on them to an extreme level due to their need to be in control of the situation. An article from The National Autistic Society of the UK stated:

“…those who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidant behavior is rooted in an anxiety-based need to be in control.”

This resonated with me. It seemed like this was the exact explanation of what we have been dealing with.

I dug in deeper and shared the information with the hubs. He also felt that this seemed to fit. I printed out information. I highlighted the snot out of it. I sent the information to the doctor explaining what I’d found, adding that to the evidence. I felt excited but, knowing that I’m not a doctor, I really wanted an official diagnosis. The drawback? PDA is not a recognized individual diagnosis and is almost unheard of in the United States. All the information I was finding was from the UK and, despite their very progressive recognition of and acceptance of ASD, they are fighting their own battles to get PDA recognized over there. Still, I had that definition in my back pocket. I added it to the huge binder I keep with notes and health files for C.

binder

 

Now, almost a month after the evaluation sessions, the day comes for our results. The hubs and I meet with the doctor to review and discuss. We were handed a 20-page report! The anxiety I’ve held in all this time starts to ebb. If there are this many pages, it must mean something! It means I’m not imagining things. There are pieces missing from our puzzle of a kid. Our appointment runs two hours long, just in reviewing and discussing the large report. Unfortunately, we walked away with more questions than answers, and I won’t go into the fine details here. Suffice to say, she diagnosed C with:

First off, I was thrown by the “provisionally” aspect. Does he have autism or not? Her response was that she found C very complex and, because she didn’t have information from teachers, she couldn’t be sure. He may simply have executive function disorder and anxiety or, he may have autism, which has both of those issues included. Her suggestion was that we first focus on helping his anxiety and then we will see what’s left. Once that’s more in control, we will be better able to know if he actually has autism or not.

It’s Schrödinger’s Autism. Until you open the box, he is both autistic and not autistic. The evaluation process was stressful and difficult on C but, it was worth it to have a clearer picture of his needs. For now, I’m saying, based on my first-hand knowledge of my child, that he has autism. In fact, I am convinced he has PDA, which, again, is a sub-set of high-functioning autism, with a base rooted in anxiety. I will proceed with this opinion until proven otherwise.

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Categories: ADHD, Autism, ODD, Parenting, SPD

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