Personal Questions

  1. What therapy or intervention did you like the most and/or find the most helpful?

    I find Sensory Integration the most helpful; the least helpful would be the mega-doses of vitamin B6.  

  2. What is the most frustrating thing about being autistic?

    One would have to be society's love affair with the horn. The explosive noise sounds by surprise, and I dislike surprises anyway. It causes pain to run throughout my body like an electrical jolt. It is frustrating knowing that even after being so traumatized, there is nothing I can do to stop them from doing it again.

    The other would be in knowing that my level of functioning will continue to go in uneven cycles. Episodes of low functioning is not something I look forward to, especially since that is when my internal torture is at its worst. I can always push for 100% high level of functioning, but it won't happen. It is distressing.
     

  3. Do you see yourself as just another individual or as an individual who has recovered from autism? Are you concerned about a "relapse"?

    Unlike most other conditions, disabilities, and disorders, autism is pervasive, so much so that it involves every facet of my life. "Recovery" is not a good word because it connotes that was I was "well," then became "ill," and now I am "well" again.

    By time of birth, the interruption in development typically has already occurred, and nothing after the fact can change that. The best that can be done now is to reduce the factors that aggravate the disorder, making it so much worse than need be, and also do something to help increase the rate of development.
     

  4. What is the most difficult challenge that you have had to overcome in your recovery?

    It would have to be in convincing society that I'm not retarded, that retardation and having a low level of functioning are not the same thing. I would be at a group setting with friends, only to have people ask my friends later, "Who was that retarded guy you were with last week?"

    It is equally difficult to convince parents and teachers that there are physiological reasons for the negative behavior so often associated with autism. All too often I am told that the behavior is due solely to stubborness and that I don't know what I am talking about. If you don't like the behaviors, then don't treat the behaviors - treat the cause of the behaviors.
     

  5. Discuss your sensory deficits and how you cope with them.

    Sensory confusion is a term that I think pretty describes what happens all along the nervous system when one's senses get messed up. I get dazed and numb. I can have an ache without grasping where I feel the ache, or even whether I feel, hear, or see it. My senses have gotten confused and all I know is that it is torment of some kind and it is real. It is like an office that has gotten shuffled around to the point that every worker is confused as to what his job is supposed to be.

    The therapy known as Sensory Integration seems effective in reintegrating the senses, but it doesn't stop it from happening again, thus the need for repeated therapy. Sun glasses and ear plugs also help, as does a quiet time in a dark room, aka sensory deprivation.
     

  6. Do you take medication or have you taken medication and do/did you find it effective?

    I take Depakote, a drug for seizures and mental clarity. I also at one time took Prozac for help with my serotonin level. I also find that the herb Gingko Biloba helpful in maintaining mental clarity.
     

  7. Can you imagine being a person with mental retardation and autism? What suggestions do you have for those of us whose job it is to work with them?

    I can indeed because in a sense I am retarded myself at times, or what I call being low functioning. Five years ago, I had opportunity to take two separate IQ tests. One was done on winter mornings, typically times of high functioning for me. The result was 138 verbal, 79 performance. The was done the following Summer, in the afternoons, historically times of low functioning for me. The result was 80 verbal, 65 performance. Keep in mind this was before I started taking medication for it.

    My Suggestions:

    • Teach everything in very concrete, tangible terms.
    • Encourage physical activity.

     

  8. What situations give you trouble throughout a normal day?

    Times when I have to be out in public, i.e. grocery stores, parking lots, etc., with the subsequent crowd noise, especially on days following nights in which I didn't rest well due to various sensory issues.
     

  9. How long can you focus on one thing or task?

    It depends on a number of factors, especially sensory related ones. How bright is the lighting? Is it fluorescent or otherwise? How much background noise? Is that noise meaningful or meaningless? Is the noise steady or explosive in nature? What is the room temperature is it? Also, whether I've remembered to take my medication.

    Anywhere from not being able to focus at all to being able to focus for several hours at a time.
     

  10. How does strong light or sound affect you?

    Text
     

  11. What one thing do you recommend for trainers working with autistic children? What do you not recommend?

    Whisper, don't yell. The children's hearing are already hyper- sensitive as it is.
     

  12. What particular things in the environment (lights, sounds, movement, etc.) make it easier or harder for you to concentrate on what you're doing?

    It goes back to my over-all level of functioning, also to the number and kind of explosive sounds. Examples would be paper crackling, objects clicking, people tapping tables. It need not be loud at all to be disruptive, possibly even more so when it is soft.
     

  13. What have been the most beneficial services or interventions you've received?

    Sensory Integration, Aerobic exercise, and medications (Depakote, Prozac)