Thursday, June 13, 2013

Round Two with the Neuropsychologist

We were asked to take our youngest son back to the neuropsychologist so he could conduct one more test before finalizing his report. The exam basically tested our son’s ability to read expressions and tone of voice correctly.

It was obvious during the exam that he didn’t have a problem with this skill, he even found the test humorous and could easily indicate when someone was grouchier than another. At the end of the test I asked the doctor a few more questions regarding his final diagnosis of anxiety.

I asked him, “What did you think of the information we provided you? (this included the feedback from grandparents and other relatives along with teachers and a close friend regarding what they observed in our son since he was 2 years old.)

He looked puzzled and said that he didn’t recollect this information.

I then asked him what he thought of the school psychologist’s observation? Again he looked confused.

So I asked, “Did you read all of the information we gave you?”

He said, “I admit that I did not.”

Though I appreciated his honesty, I was upset. I felt my heart sink with disappointment. Didn’t he value the input we had to share, wouldn’t that give a more complete picture of our son’s behaviors besides his observations inside a clinical observation room? Plus, I worked so hard on providing him that feedback, the least he could’ve done was read it, it would have taken less time than it took for me to wait in the waiting room that day.

Moving on from this disappointment I asked him many more questions in trying to understand his final assessment. He did admit that though he did not see autism, he did see something, but he wasn’t sure what it was. He drew me a picture with a long line and said that a “normal” person would be on the left side of the line and a person with very clear autism (trouble speaking etc.) would be on the right side. He said he would put my son in the middle.

As I sat there I remembered the final thing the doctor said to me before I left the last appointment. He said with a smile, “You should be happy because your son does not have autism.”

I recalled a few days later when I took my son to the yogurt shop where we were surprised to see our friends and I watched my son withdraw and go into a total meltdown because, “it’s too loud and too crowded and I don’t want to play with kids.” At that moment I chuckled as I thought of the doctor’s final comment, thinking to myself, I don’t feel so happy. My son has challenges, similar to those with autism, yet he can’t get the help those kids get. Instead of occupational therapy for sensory issues, I was told to read a book to learn how to help him fit in.

As I explained this experience to the doctor, I told him, “He may not have autism, but he has a lot of challenges and he needs some help!”

With that he said that he would request in his report that the school evaluate him to see if he qualifies for occupational therapy, but warned me that he may not be severe enough to qualify. Considering our school district, I already know what the outcome will be—no occupational therapy.

The doctor then explained that he thinks that the underlining cause for all of my son’s symptoms is a mood disorder.

Ah.... a mood disorder, welcome back old enemy.

He explained that maybe the reason that our son is showing these autistic traits, especially in the “real world” is because his moods affect his ability to function. His depression and anxiety shut down his desire to be social, makes him cling to routine and meltdown over transitions. It also intensifies his sensory expereince and affects his ability to focus and function in everyday tasks. Which is why during the assessments, which were conducted in a room free of all outside stimulus, he appeared to communicate well, have good eye contact etc. He also said that when a chid has a highly focused interest, as seen in kids with high functioning ASD, they do not take electronics into consideration. So my son’s intense interest in the Minecraft computer game was not considered in his assessment.

He also told me that along with therapy, I should look into the Social Communications Disorder (as mentioned in our last meeting) and also NonVerbal Learning Disorder NLVD. But he felt pretty strong that mood issues were the underlining cause.

I asked, “So this is a lot like what my oldest has, except that it presents itself differently?”

He said, “I couldn’t have said it better.”

* * *

It’s been 2 weeks since this appointment. We met with our psychiatrist yesterday and he acknowledged how hard it is for kids who have autism traits, but lack the severity to get services. He recognized that they still need help so he told me to find out on my own how to help him, using treatment for Asperger kids as a guide. He also said that he wasn’t convinced that our youngest would struggle like our oldest had, instead he felt that he would do well as he matured.

Would do you think?


13 comments:

  1. Can you get a second opinion? If you feel this particular doctor didn't take the time to properly consider all of the information available (like the reports he didnt read), do the evaluation again with someone else.

    For your peace of mind, if nothing else.

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  2. IMO, a second opinion is in order.

    In order to get a proper assessment, he needs to look at all the info available.
    The fact that he didn't care to even consider any info you provided except his exam is a strong enough sign of incompetence.
    It means that he does not care about who is your son or who are you, but about how do people conform to his world.
    It's a bloody good recipe for disaster.

    About reputation, I learnt by experience that reputation is not always accurate.
    My ex-pdoc had a strong reputation in her field, yet, she provided me like no service at all (worse, she put me in such a mess !). She was exactly the same as the neuropsychologist, even worse.
    So, don't rely too much on reputation to choose someone.


    To have BTDT, I can only advise you to run far far away and choose someone else who really cares about your son and about his job (not someone who cares only about how people fit his world).

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    1. I hear you, not all docs with a good reputation are accurate. I think with my son being on the asperger end of the spectrum, and aspergers being removed from the DSM, I may be finding this kind of response with a lot of doctors.

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    2. But does someone with Asperger suffer from ASD ? I may not get it quite right, so it worth the effort asking.

      You may already know it, but I found some tips to avoid doctors telling me "if you commit yourself in therapy, it will solve all your problems" response.
      I know I get off topic, but as you need to find a doctor, I found some tips to manage finding a good doctor.
      First, I write a letter stating about my condition and about my wishes (that my condition is of brain damage and not due to parental neglect or choosing to be weak-willed. And that I refuse any theoritical debate about the origins of the illness and the legitimacy to prescribe ritalin, because it always goes to a point when my family and I are judged about our life and our moral values, or our "choice to have no moral values").
      Second, when I need to choose a doctor, I now interview doctors over the phone. I now start my interview with "I've dealt with doctors who refuse to help me because I take ritalin to manage my ADHD. How do you feel about it ?". Believe me or not, like that, I can also track bigot doctors who say that they are completely ok when they are not.
      For me, voice is more accurate to spot lies than body language (body language is more often than not misleading for spotting lies: fidgeting is often interpreted as lying when it's due to ADHD or being a bad communicator). I also push the issue to see any blatant contradictions in their speech. With these two tools, lies are easier to spot.
      Why not having a list of questions for when you interview doctors in order to choose the right provider ?


      Take care and don't give up !

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  3. I think you got the shaft! This guy sounds like the first one we went to: "If she had autism she'd be banging her head and not be able to speak. She doesn't have autism, but she's very....ummm...unique."

    IT IS CALLED ASPERGER'S, DOC!!!! Take a moment and read about it!!!!

    Is it necessary for you to have a "label" right now? Do you feel you will get any more useful services than you provide right now if you do have a label? Do you honestly think the school will provide a host of extra services unless his ability to participate in education is severely impacted? Do you even WANT the school to be in charge of such a task? All of these questions need to be examined.

    Lastly, remember that kids can have multiple diagnoses. When the dust cleared for my dd, she ended up with Asperger's, ADHD and, you guessed it...mood disorder NOS. Even with all this, we never sought help from the schools, nor did they offer it. Now that she's a Jr in High School, I am really grateful we did it OUR WAY.

    I hope you can get some resolution.

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    1. You bring up some excellent questions, my school has already warned me that even if I came back with a diagnosis of ASD, they may not even give him and IEP. It does make me wonder if we would do better putting our energy in helping our son on our own, rather than fighting a system that doesn't want to help. I am so tired of the fighting, it taking so much energy. Also with Aspergers removed from the DSM, would I be chasing a ghost diagnosis?

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    2. Is he being covered under a 504 plan at school?

      The school would not be in control of everything, as the parents are 'supposed' to be equal partners in the education of a child. Again, it all depends on the school system, which is just so wrong.

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  4. Really...he DIDN'T read the input you gave him?! REALLY!? That is upsetting.

    Love that boy......we'll talk later.

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  5. Ugh! I do wonder what the bias is against electronics in creating a diagnosis. Being able to focus on electronics doesn't count for ability to focus for ADHD either. It seems like electronics get treated like some kind of "mental crack" that no kid can resist. But my DD can play on the computer for an hour and then walk away. It seems to me that a focused interest in MineCraft would be no different than a focused interest on LEGO or model trains... Just that MineCraft happens in a virtual world.

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    1. I agree. And our son’s interest wasn’t just playing the game, but he talked about it, his imagination was all about it and when he did play with a friend, they played mine craft on the playground (pretend play). He also wants to be a miner when he grows up. So his interest is more than just playing a game.

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    2. Hi Mama bear ,
      Autism is a very complex syndrome , you can have 100 Asperger's in a room and each one will be completely different , for instance some have sensory issues while others don't , or some will have communication issues where others don't , some can even be socially ok as long as they know the person well , and so on.
      It looks like your son has a mild form of Aspergers , but with proper intervention he will be fine , advice from a mother who has 3 boys with issues : strength his weakness as much as possible now before his teen years , occupational therapy is great for them specially with sensory issues and academics , it's also helpful with fine and gross motor skills .
      Best regards

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    3. Thanks for your feedback, even though he wasn't labeled with Aspergers, I still feel like he has plenty of traits of it. I am having trouble getting help for him without the label though, especially OT. Any recommendations on how to do this?

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