Saturday, December 20, 2014

Beyond Behavioral- The necessity of medical tests for ANY behavioral changes in a nonverbal person

I may have briefly mentioned some of Beans violent meltdowns lately. I tend not to share a lot of the personal day to day happenings that I think may reflect negatively on my kids. Not because I think one should never talk about autism in a negative light, but because I feel there needs to be a limit to how much of my children's stories I share with the public.

Anyway, back to my point... He has been having pretty severe meltdowns several times a day that have been leaving the whole house exhausted. Obviously, the meds he was taking were no longer helping, so I took him off of them. His mood improved overall, but the meltdowns did not cease, even a little.

When I took him to the doctor about it the first question was if I wanted to try more meds.

That is never the right first question when dealing with a nonverbal autistic child. Really, any autistic child, but especially not one who is extremely limited in communication.

I asked if his lab work we had done several days ago was back. It was, but not even really considered. I had to ask for the lab to be done, and for it to be read.

Turned out his blood sugar levels were a little low, and his thyroid was high.

I am hypogylemic. When my sugar gets low I can get very irritable, and my body reacts as if it's in an emergency state, because it is. If I were nonverbal, and my sugar was low a good part of the time due to me not sensing my body's signals that tell me when, and what to eat I'd probably be punching everyone,and tearing the house apart all day, too.

The thing about it is if I had not insisted the doctor would not have checked. If I had taken back to his autism doctor she would have sent me right back to the behavior specialist who would have treated it all as if it were behavioral. There was no winning for him. He would have had to be put on a behavior plan that did not address his hunger, or blood sugar issues, or given more psych meds. Obviously, none of that would have helped, and he would have been left to suffer. The last time I called for advice I got the essence that they did not like that I didn't follow their advice. I didn't think most of what they had to offer was applicable. I have to do what is best for my child. That is when teachers, doctor's, and therapists get a bit miffed with me. They tend to view it as I am not taking their advice, but complaining that things aren't working for us, yet I won't accept their help.

We have to be vigilant in making sure that all medical issues are thoroughly investigated when our severely autistic loved ones are displaying alarming behavior(s). It's not easy to always get them to a doctor, and often procedures require them to be restrained, and whatnot, but it is necessary to be sure their medical needs are met. Much of the time any pain, or illness pushes an autistic's body to be at the verge of fight or flight mode. Beans seems to be sitting at a 9 (from a frustration measuring scale of 1-10) all the time. The slightest thing gone wrong sends him into a violent meltdown. To a behavior specialist (or most anyone else for that matter) this would look like a child who is spoiled, and needs to learn they just can't have what they want all the time. It's anything but. His actions told a story to me of a child in pain, or some other situation that was chronically getting worse.

Of course, we don't know if it is just about the blood sugar levels. He could be having acid reflux, or any other host of issues. We know that the one test suggests he may have issues with hypogycemia, and it seems to fit the behaviors i have been seeing. The only way we will know is by testing his blood sugar regularly, and seeing if a different diet doesn't improve his behavior.

This is where I ask you for advice! We cannot get a reading on him. It took 3 of us holding him down, and we still were unable to get the test completed. Is there somewhere else on the body besides the fingers that blood sugar can be measured? There is no way to get his finger pricked, and the blood gathered. Any advice appreciated! :)

Read more about this topic HERE.


  1. I'd start an alternate diet regime for him to test for such things as hg. More meals per day (5-6) but same amount of food. I personally have to lie down on the floor after eating.

    1. We're trying to change his diet up, but not an easy task with him. Some days he ends up eating better than others. Sometimes, with me I know that I ate well, but my sugar isn't responding. So many variables, and so hard to decipher with someone like Beans.

    2. Yes, very. Keep us posted on what works and doesn't.

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