The Globe and Mail posted an article that just steamed me yesterday and I wrote a lovely letter to the editor. (Don't worry - it was polite)
Here are the links to the articles:
http://www.theglobeandmail.com/servlet/story/LAC.20070403.HAUTSIDE03/TPStory/specialScienceandHealth
Someone on an autism list gave me a better focus, however and it has in turn helped me focus some of my ideas!
"a proportion of this money is wasted / mis-spent, as a result of "penny wise, pound foolish" policies, heel-dragging delays, and inappropriate use of resources."
"Unfortunately given the nature of both the media and the political system, it's a lot easier for them to concentrate on simple things like total numbers, rather than the details of *how* these resources are used, how effective they are (especially in terms of long term outcome), and comparing early intervention with [later] "emergency" intervention."
(Thanks T.J.!)
These supposed "therapies" or resources are costing parents way too much money...and not even addressing the core problems, which is really a huge waste of money in the short and long term. Even more money is spent researching the causes of autism, but not researching the core problem.
When the core problem is treated, the symptoms (behaviours) seem to disappear or lessen. Most people say that when their autistic child is happy or feeling good, their behaviours are not as noticable. I know for myself that if I'm feeling ok and doing all rigght, no one would ever know I'm autistic. When I'm stressed out or melting down, there's no question...the coping behaviours come out in full force!
So, my questions for medical people, parents, researchers and therapists are:
How is the autistic person perceiving things? (This may take some looking into the nervous system and bodily functions - let's stop looking at this as strictly a behavioural problem and find the real reasons)
Why is it that they perceive things so differently?
How can that be helped?
What can be done to help that child feel better so he/she doesn't need to use insinctive coping behaviours?
What strategies can be taught to the child to help himself deal with the discomfort he or she feels?
How can this knowledge and focus be used to form a treatment plan that actually will benefit autistic children today and later on as adults?
I can see the parents' position: they see "instant improvement" in the symptoms. Just like people will see improvement when they take Contact C for a cold. The symptoms "go away" but the root cause of them does not.
What's worse is that these folks have led parents on to believe that these inappropriate treatments are the only way their kids are going to get any help, hence why the parents are so adament that they get funding for this. I don't blame the parents, I blame the university trained professionals who are propagating these ideals. I blame the media for printing articles like that saying what a burden autism is and then taking the wrong focus.
A quote from the article:
'Dr. Bryson said it is not clear if investing in behavioural therapy like ABA/IBI in childhood will ultimately result in adult autistics who are more able to be independent and to work.
"But we need to ask the question: Does investment early on have significant economic benefits later?" Dr. Bryson said.
Dr. Ganz said recognizing that a child diagnosed with autism today may become an adult who is unable to work and who requires specialized adult care should awaken parents to the need for financial planning.
"Parents of children with autism should seek financial counselling to help plan the transition into adulthood," he said.'
That's pretty sad when you have to get financial counseling when your child is autistic. How many parents of diabetic children have to spend this kind of money? How many parents of severely physically handicapped children have to get this kind of funding?
Most of these other disorders are treated as medical conditions and treated appropiately. Medical problems and treatments are usually covered by the government health plan.
Why is autism not being treated as a medical condition? (Some will say it is, but it's not)
ABA/IBI is a form of teaching. It is a teaching method, not a medical treatment. It is not treating the medical problems behind autism.
I would like the researchers, medical professionals, parents and other people involved in autism "treatment" as it is today to look at my own example and again review the questions asked above:
ABA/IBI did *not* medically treat the GERD and bowel problems I've had my whole life. They did *not* prevent those problems from almost killing me at the age of 23.
ABA/IBI did *not* help me find a diet that would work with my ever changing dietary needs due to above stated digestive problems, which I still struggle with to this day.
ABA/IBI did *not* treat the astygmatism I have in both eyes, causing me to have poor depth perception and thus be afraid of certain things.
ABA/IBI did *not* treat the thyroid problems I am having and have been having since I was a child.
ABA/IBI did *not* give me the coping tools I needed to help me deal with my very different way of perceiving stimulus, thus forcing me to grow up in an environment that was not only harmful to me, but frightening as well.
ABA/IBI did *not* help me learn to relax, create coping strategies that are not only effective for me, but appropriate to others around me (i.e.: social niceties).
ABA/IBI did *not* operate on the principle (nor does it still) that when I am not stressed out, I learn things such as social skills much easier. I've learned more in Toastmasters as an adult than I ever did in ABA!
ABA/IBI did *not* teach me the skills I needed to live independently as an adult: budgeting, dealing with stress, job interviews, training for my career, dealing with other people such as romanitic relationships, working relationships or business relationships.
ABA/IBI did *not* provide me with the self confidence I needed to overcome my difficulties. It only told me that I was defective, my problems meant nothing and that I just had to "act normal". It did not empower me.
ABA/IBI did *not* make feel like I was worth being a member of society. It also gave me the message that the people in this world are mean-spirited, not compassionate and interested in me only if I conformed. It did not make me feel like I wanted to be a contributing member of such a hateful world.
I got empowerment and the tools I needed from places and people such as:
* Alternative High School who had the right focus: empowering us to take charge of our own lives and situations
* Toastmasters where people learn social, leadership and communication skills in apositive environment
* Doctors who actually took the effort to look at my physical problems and treat them so I could start feeling better. (I never told any of them that I am autistic - amazing how that little omission of information got me the care I really needed!)
* The many people in my life who actually took the time to get to know me, took the time to mentor me and took the time to help me discover the great things I have to offer as well as the strength to handle my differences and still be productive.
ABA/IBI did *not* do any of that for me and I believe that it is a terrible waste of money both now and in the future to encourage this as the only treatment! It is an educational tool, folks, not a medical treatment.
Being treated like a defective behaviour problem is a horrible way for any child to grow up.
There is more that should be done than behaviour modifcation in autism!
So much more...
Anyway...there's my rant for today. I want so much to see things change for the better. How do we exact that change?