What I wish my Doctor Knew
I wrote the following list in response to a question about finding a good family doctor for a child with autism .......the following statements come from my years of listening to the adults on the spectrum......I have to admit that some of my thinking is included but it all begins with them.
1. It's not about an abnormality in the brain. My brain is working just as good as yours, or perhaps even better. It's about the system of the body as a whole. We have spent over 60 years and millions of dollars trying to pinpoint the specific abnormality in the brain. It doesn't exist. It's time to move on.
2. I can have a dual diagnosis. Epilepsy and CP are not autism, but may also be affecting me. The same is true for many other conditions such as constipation and allergies.
3. You cannot measure epileptic activity in the brain with an EEG unless the seizure is happening in the moment that the EEG is being taken. Don't waste my time.
4. MRI's cannot find anything new and actually can cause harm as the magnetic forces affect the cells in ways that we cannot see.....don't waste my time, my money or harm my body.
5. There is not a single psychiatric medication whether it be for depression, anxiety, schizophrenia, paranoia, or whatever, that has been scientifically validated to work for autism so don't prescribe them to me. They do far more harm than good. Adding a second (third, forth, fifth) and so on to deal with the side affects that the first one you gave me is guaranteed to make me worse. If medications are your only solution, get out of the business. You are doing far more harm than good.
6. At the same time be very cautious of the term "scientifically validated" when it comes to treatment modalities. This only means that something made it through a scientific study, not that it has actually improved the lives of those on the spectrum in any way at all. Listen to those with experience.....they are ones who have to live with the long term results of what you are doing. There is not a single adult who has survived ABA/IBI treatments who will get up on a stage and tell you that this treatment is the reason that they are successful as adults. In fact, most of them are in 24 hour care situations trying to deal with the PTSD (post traumatic stress disorder) it created. In contrast, there are hundreds that will eagerly share how FC has changed their lives for the better. Be very careful to who and what you are listening to.
7. The symptoms of autism: an impairment in communication, and impairment in social interaction and the use of restricted, repetitive and stereotypic behaviors, interests and routines are only symptoms. They increase and decrease due to the level of anxiety I am in. If you want to see me at my very best create a situation in which my anxiety level is as low as possible. Anxiety comes from 3 sources:
the outside (environment) via the sensory system.( keep the amount of incoming stimulation as low as possible),
the inside (the body) through physical pain, biomedical problems,emotions, memories and so on, and
boredom: I have a very busy brain, which is on the go all the time so I need to keep it stimulated.
8. Your job, as a doctor is to bring relief to the body: there is not a single answer for our problems. We are all different and we depend on you to be open and knowledgeable enough to help us with our specific concerns. If you can't do that ADMIT IT and get out of the way. Just a hint: we do know that gastrointestinal difficulties, immune system dysfunction and toxins are involved so you might want to start there. In the meantime keeping the environment as calm as possible in the midst of providing mental stimulation will help when we are in your office. Waiting, by the way, is intolerable. Respect our time as much as you expect us to respect yours.
9. Be cautious of anything that you read or hear of which claims to be a "one treatment for all". It does not exist and usually does more harm than good. Be cautious of any treatment or method of testing that costs a lot of money. This indicates that someone, somewhere, is GREEDY and using my difficulties to line their pockets. Again these people do far more harm than good.
10. My main disability is ability to clearly communicate with you and so I need your help. Everything I do is communication. If I can't use words, let me use whatever I can. At times it will only be what you might see as inappropriate behavior. I depend on you to read that behavior to get the messages you need from me.
11. I don't need to be "fixed" when it comes to autism, but I do need help with the other biomedical concerns I am experiencing.
12. And most of all, I am aware of absolutely everything that is going on around me. My symptoms may make me appear to be mentally incompetent or unaware of my surroundings but believe me, I am on top of everything in my mind. I just might not be able to make my body react the way I want it to. So I hear everything you say no matter how quietly or how far away. I read body language far better than you can, and I absorb your emotions: fear, ridicule, pity, and so. Treat me with the same the respect that you expect to be treated and I think we will make out fine.
13. Take full responsibility for every decision you make for me and remember I have to live my life with the results of what you do. Don't ever blame your incompetence on my autism.
14. And most of all: PLEASE do no harm. I'm already in trouble!
Autism Consulting Service