originally posted 6/12/10
So the doctor give you the C word and says,”Yes, you have cancer but it is treatable but you will not be like everyone else….you will be different but you will still have a semi-decent life.” You are given a tedious and painstaking regiment of what you need to do because it has worked on millions before you and you have seen the science behind it. Your treatment is proven and by many studies not just one and peer reviewed so it was not something one doctor paid to see get pushed through for selfish glory or monetary reasons. You are tired though it’s been months or maybe years and while you are getting better you are not improving at a rate you think is fast enough so you chose to look around at other treatment options. You have heard from a friend that they heard somebody else might have tried this thing over here and gotten better and that another person in Seattle did this and made a full recovery. You hear these treatments have no science behind them at all and so are risky medically speaking and ALL of them are going to drain your financial resources with no guarantee that you will get any better at all because nobody did a study that was not reviewed by a group they were not paying to do the review and none of them bothered to do any actually control group to see if they would see the difference. What do you do?
Autism is not cancer! It is not awful it is not tragic and your child is not (unless they drown the #1 cause of death for kids with autism in the US under 18) going to die from this. Dear reader if you have not seen a dead child before (I spent 11 years in the fire department) perhaps and maybe you can not appreciate that children with autism do not die from autism and that is a really tragic thing to behold.
My family has only been in autism world for 9 years and only really known that is a world we belonged in for 7 but in that short amount of time I have been exposed to 1,000 of families some for short questions via email and other for years.
When Bird was first diagnosised his neurologist wanted to use steroid therapy on him and I was ready to jump on that band wagon so ready to get rid of this autism that they told me would have my son living in a mental institution at age 8! Drop the IV, get me the pill, where do I have to go to get this fixed and NOW so we can move on with our lives.
My husband KAM pulled me off the ledge and said as only he could,”This has no science behind it…and we are not going to do it to our son.” Normally I would fight him or do it anyway but this time I heard him loud and clear and we did not turn our son into the human guinea pig on the word of a doctor who had no proof it would have any positive affect on him and better yet….failed to mention the actually long term affect of steroid…I conveniently forgot these affects because at the time I so badly wanted my son to speak that I would not be able to see what I already knew to keep him out of harms way in the name of a cure.
There have been other tempting cures over the years I really though about when Bird has been in a bad patch. Each year he regresses for a time and then comes back to us and it’s awful for all involved but we have NOT gone to the experiential side.
Les is a constant reminder of who Bird was and how far he comes each year. His gains are not even close to what they used to be 5 years ago but he has less of a road now to travel and that is hard to remember when you are for the 50th time explaining what religion (just a true example but one of many) is when he has been in CCD for 5 years and he again forgot and lost that word like so many that he has lost!
I understand autism is a spectrum and I understand that kids all react differently to different things and that they did not all likely get autism the same way so perhaps something worked for your child that might have worked for my child but did not at all work for another child. ABA works for every child. Applied Behavior Analysis is proven and works even on the rat so it can’t be wrong so if you do something else at least be sure to LOVE your child enough to take the one thing that is Scientifically Proven to make a difference despite all the hard work involved…yes it is all day every day and that is not easy…but move on and do it anyway!
So Dear Reader I would say to you that the 2 most successful adults I know with autism neither used anything but ABA to go from 4 years old and non-verbal to tax paying college graduate and most of their friends are the same (I don’t believe they polled so no idea if some did something else).
Your meds will eventually stop working, your hbot will wear off but your behavioral interventions will always yes always have a positive change if you do them correctly.
We never had a consultant but did closely follow the ABLLS and Les and I were able to help Bird become a boy who can do MORE than most other kids his same age except converse with as much ease and that I guess we will work towards.