Category Archives: body responsiveness

Spectrum or Different?

Autism Spectrum Disorder is pretty broad. I met a young woman today who has been diagnosed with Autism Spectrum Disorder. She seemed totally like every other neurologically normal person I’ve met in terms of motor, speech and social skills. Maybe I’m missing something she suffers from, but why on earth do we have the same diagnosis?

If I get a paper cut and you amputate your leg, people don’t say we have a Laceration Spectrum issue. But it’s worse with autism because autism is so many different issues lumped under a huge umbrella.

I have written my opinion previously that I believe that my autism and Asperger’s Syndrome are different neurological conditions with the same name. This confuses people. Temple Grandin is unable to read people, thinks visually, speaks, and needs no 1:1 support to get on with her life. I am her opposite. I have great insight into people, think in words, can’t speak to save my life, and need 1:1 help.

Somehow the brilliant minds looking into autism haven’t noticed that the opposite symptoms might be different conditions, not a spectrum. Her condition may primarily be a neurological difficulty reading people while mine is primarily a mind/motor disconnect, though both of us may have problems of self-regulation and sensory challenges.

Would it make sense to call a heart problem and asthma a spectrum disorder because they both lead to shortness of breath? Not possible because doctors identify heart issues and lung issues medically. Brain issues are the most unknown, so doctors look only to the external behavior. That’s observational, not medical.

Temple Grandin has poor eye contact. Me too. She talked late. Me too—to the point of still not talking. She has some things similar to me, but they are superficial similarities, in my opinion. So, I have decided to help out the professionals. I am happy to abandon the diagnosis of autism and give it to Temple Grandin and those with similar symptoms since it really isn’t the most helpful term to give people an insight into my medical problem. In fact, maybe we can have a contest to come up with a new name for my kind of autism. I have a few ideas:

Severe Motor Dyspraxia

Mind/Motor Communication Linkage Disorder

 Self-Regulatory Motor Control Disorder

You get the idea, no? Maybe a new name would lead to a better understanding and treatment of this neurological condition.


Behind the Silence

This story is touching and important. It shows commitment, determination and love and how once again parents need to trust their observations over expert advice. Here was a boy, trapped in his body in a different way than I am, but like me he was not able to talk, gesture or write independently. Therefore doctors incorrectly advise his parents that he is a “vegetable.” My mission is to give non-verbal people the benefit of the doubt. In many cases people have emerged from non-responsive bodies to show intelligence. Why then do so many professionals persist in seeing people with non-responsive bodies as not? The lesson from this film is not just the inspirational one. It should be a caution to professionals against assuming the lowest for their patients based on external observation. Time after time people with cerebral palsy, autism, strokes, comas, and even encephalitis have been able to emerge to show that some of them were thinking while unable to show it.  It boggles my mind that people resist this possibility in so many instances. The amazing thing is that this has been going on for decades. Each individual emergence is a story and no one generalizes it.

The Mind Body Connection, and Exercise

This morning I was edgy. My electrical currents were coursing through me. In Autismland that means either do stims or temper. It is a stressful time for me and it is hard to be calm, but I can’t freak out just because I’m stressed. This is what my family did to help me: first I worked out with weights. I complained non-stop. Then my mom insisted I go on the treadmill. I lasted fifty minutes including running on and off. It is amazing. I feel normal now. 
This summer we have decided to concentrate on fitness because my body needs to listen to my brain better. If I could have a trainer every day, how would I improve? I wish I could do that, but we have to work out even without a trainer because it is important that autistic people wake their mind/body connection. It is not do-able if the person is not using his body in exercise ever.
I recently hiked with many autistic people. It was short. Maybe a mile, but it had a hill at the start. I saw many turn back after five minutes. They were not used to moving enough. My new goal is to get fit this summer and see if it helps my brain too.

The Internal Autismland

The frustration of having autism is matched sometimes by the frustration of the parents of an autistic person. It takes so much work, perseverance, and motivation to fight on the bad days or moments when Autismland swallows their child whole. My poor parents say it is remote and far away expressions I make in those times. How I annoy others when I’m in Autismland is a problem.

Choosing to stop or escape is not always possible. My parents or aide have different strategies to pull me back to reality. I exercise or think. They make me do one or both. It helps a lot forcing me to think when my brain is sliding into sensory heaven. It is a struggle between my senses and my mind. If no one helps, my senses usually will dominate when I’m in one of those moments.

Now, I realize I’m no picnic during one of those episodes. The horrible thing is I bug others then, but I don’t change in the way I want because I don’t have the control I need when these episodes occur. Other times I get easy control over myself. It may need lots of training, like sports and music skills. I notice jumping jacks help me reset my mind too. I think the difficulty is the intense OCD aspect. It is hard to resist sometimes. It is scary too to be at the mercy of stims or impulses but I am appreciative when people persevere in helping me regain control of myself and return to Normal-Land.

Waking a Sleeping Mind Body Connection

I work out and I feel a lot better. In truth, I feel like my body is waking from a slumber. In my doing jumping jacks or knee lifts I teach my body to respond to commands. In the strength exercises I gain muscle power. In the cardio, I get healthy. It used to be horrible. I had soft muscle tone, according to my old OT. In reality, I was out of shape. I was mostly bored in adaptive P.E. I never had exercise, just drills. I needed to teach my body to listen and I needed exercise to do it. I’m tall and big-boned. If I wouldn’t have autism I’d try out for football or rugby or something like that. Now I have to be content waking up my sleepy and long slumbering response system, and doing what my body needs to wake up even more. Staying out of shape is not for me at all.