Sorry I haven't written for a while, been living my life! The good news is that the lady a mutual friend mentioned (its in an earlier post) who has a wee boy newly diagnosed - got in touch, and from now on she will be know as 'my new friend'. So I have been quite busy with my new friend who I just think is amazing. She used to work in a special school, so she recognised the signs and managed to get her son diagnosed at two and a half. She instantly set about doing what she could, and put him on a GAPS diet, and has also managed to bully her GP into action to do some tests on him so she knows where to target her attention. Its been about 4 months since his diagnosis and her interventions, and on re-meeting her Psychologist, this professional said that she was doubting her diagnosis the change in him was so great! I put this in just to illustrate how important early diagnosis and intervention is, as opposed to our NHS policy of "lets leave it as long as possible in case they grow out of it so we don't have to spend any money." This wee lad has - as most ASD children have - bowel problems. She described a particularly nasty pooh to me, saying her Dr's response was that this was normal for her son if thats what was normal for him. I mention this, because our ASD children seem to get the rough end of the stick. Things go for them that wouldn't otherwise go for anyone else. What comes out of the backside of most of our kids is not normal and points to part of their problem, but because this condition is so little understood, it seems like professionals like to sweep these things aside to concentrate on areas that they do know about ( though I doubt they know much at all). This brings me to my topic today of ABA, applied behavioural analysis.
My sister asked me to write my opinion on a programme the BBC ran this week. I had come across ABA in my search to help Ed, but to be honest, it was so labour intensive and didn't seem to answer the question why he was like he was, that I never took it up. But recently I heard a couple of things that made me feel better about this, the first was from our new head at Eds special school. I took him some literature that the charity Treating Autism had produced, and some of my own ideas! I got such a nice feeling from this man, he is really knowledgeable, forward thinking and kind. As we chatted, before I could mention ABA - he brought it up and dismissed it. His reason were basically the brutality of it. The other thing I heard about it was from a talk given by a man with ASD, who referred to it as torture, and the two things combined made me feel ok that my natural laziness hadn't pursued it further. But you know, none of that prepared me for the programme.
My first thoughts were, why are they rewarding them with such rubbish (sweets), and why are they feeding them such rubbish, a burger and fries isn't food! If these children have bad eating habits, why don't they do something useful and introduce them to the joys of real nutritious food, because these children are like the carrot tops you can put in a dish of water - they will only grow so much before they die. The fact that they have such problems with food point to part of the problem. Given a zinc supplement, the sensitivity in the mouth settles down to a point where they are happy to eat. It all brought me back to breaking Eds beige diet, and zinc was one of the things I gave him. Why didn't they try addressing the why, before pushing forward with the ABA agenda.
I can feel a rant coming on, so do forgive my writing. There was a Swedish couple with their teenage son who they had treated with ABA. He appeared quite normal, you would never have thought that he was anything other than an atypical child. When shown the footage of him receiving his ABA training, with him in tears and the trainer just keeping on till he complied, the boy couldn't watch and asked for it to stop. He said he couldn't remember any of it, and his family and trainer used this to justify what they had done. They had the result they wanted and the boy couldn't remember any of it - but you know, I kind of think that he could, it was more the fact he decided to not remember it than it was forgotten. Watching the children on the end of ABA, the thought really went through my mind that for any other child this would be child abuse. Bullying of the worse kind. An adult in power, and with trust, bullying a younger powerless person. All with the best intent, although you would have to be a special kind of person to do it - I couldn't. And that brings me to another point, the type of person that this therapy attracts to practice it, is there any test they go through to make sure that they aren't sadists because I would think that if you were that way inclined, this would be a top job for you.
There is ample medical evidence to show that ASD children undergo a ton of stress at a cellular level, and that this is part of the vicious cycle that needs breaking in order to re balance their damaged biology. ABA just looks like something that piles on the stress. Head banging is a common feature with ASD children, there again is plenty of evidence that head banging comes from actual pain, seizures are common in ASD, but because a lot of them do it - the 'professional' see it as normal. For any other group of people it would be investigated as a symptom and treated, however for our children its ignored and seen by ABA as unpleasant for us to look at, and so one of the things it seeks to stop like the stims that our ASD children have. These stims are funny physical things they do, like jumping on the spot, hand flapping, spinning - weird odd behaviours that make them look really strange. ABA completely misses the point that our children don't do anything for without a reason. This are self calming measures our children have discovered for themselves to make themselves feel better. There seems to be lot of information out there backing the idea that some people with ASD have no idea of themselves in space, that their senses are out of whack. The hand flapping or what ever movement they make gives them an indication of where their body actually is, so stopping it doesn't make sense. ABA just seemed to mask behaviour, I see behaviour as a clue to what is going on. ABA demands that children look at the 'therapist' - research indicates that some ASD children senses are so overloaded that they can't look and hear at the same time - hence they don't look at you in order to hear you, or they look at you and read your lips because they can't hear you if you get my drift. My heart just bled for the parent and the children. The parents are doing the best they can, they just want their children to be normal and happy - no one who hasn't lived with an ASD child has the right to judge them, and those of us that do know they are just doing the best they can. I watched this program and thought that it typified our western approach to health. Completely ignoring the fact that underlying ASD is the fact that western medicine and industry has poisoned our children, that their little bodies need nourishing with nutrients and love. Not the love that wants something out of the deal, but unconditional accepting love. That they need to be rid of whats causing their systems to malfunction, and rid of the stress of trying to be something they can't be (something which is relevant to all of us.)
You know I have been treating Ed with pro-biotics and iodine, well the other week I put back in earth. Yes, medical clay, I give him about a teaspoon a day hidden in his cranberry juice. Yesterday, he came in so happy from school, he went straight to his pepper pig computer and played with it without stripping off his school uniform for at least an hour. I gave him some organic grapes (organic because grapes are one of the dirty dozen, and grapes because of the reversatol in the skins) which he ate - first time in a long time! He sang, he laughed, he played with hoover - what ever makes him happy, he ate his dinner, we went for a drive, he wanted a bowl of porridge which he had before his bath and up he went happy. This morning he woke happy, ate a bit of ham for breakfast, and whilst we were waiting for his taxi he was playing with his pepper pig ABC thing. It took me a bit to notice, but pepper kept saying 'look for the letter C as in candy cat' at that point the child is supposed to push the button with the C on it ( and the picture of candy cat) and Ed kept getting it right! Pepper would ask for another letter and Ed would get it right again - even if the thing was upside down. I know its not splitting the atom, but its a sign that Ed is in there, fully functioning and fully present. Its our job to help tear down the biological barriers to him being fully himself, and not our job to make him what we want him to be. To sum up ABA I will quote from my new friend 'Its brutal - but it works.' As far as I am concerned, anything that's brutal and involves children isn't right, and anything that is brutal that involves vulnerable children is wrong. I think that in the future we will look back on ABA a bit like the electric shock treatment given out for depression, as something to be ashamed of, but like I said earlier, don't judge the parents who don't know any better. Judge our professional - who should. x