- Oct 25, 2017
Yeah, I don't want to minimize anyone's trauma or experiences, and it's really disheartening to read that so many people have had to deal with such terrible treatment.Quite possible, whether because of the stage at which this is occurring - you're not going to 'fix' much with a toddler, autistic or otherwise - or because of shifts in general practises over time. After all, a lot of adult autistic people are having to relay their experiences - their traumas - from their childhoods, which are sometimes decades ago. This doesn't mean that the forms of ABA with which they are most familiar have necessarily gone away, or aren't a concern anymore, but it is possible that changes in mindset nevertheless applied under the same umbrella - because you know, language is funny like that sometimes - have eased their way in. After all, the outright definition of autism has changed within the US within the last decade - under the DSM-V, hotly debated by those affected by such changes - and a number within this thread can speak to the inconsistencies in the treatments they've received; some doctors telling them there was no way they were autistic while others thought it was quite obvious, because each was operating on a differing clinical definition.
Also, sadly, when dealing with mental health issues, non-neurotypical conditions, and other non-visible disabilities you have a large contingent of people who have a really hard time of sympathizing and either view it as a "choice" or some kind of ploy or charade.
I have had several family members tell me that they or another close friend or family member probably would have been diagnosed with autism under the current definitions. I feel like the ground has shifted underneath the goverment, health, and service industries and they are struggling to adjust. Combined with a general rise in awareness of a whole lot of toxic attitudes and you have a large contiginent of "old guard" people in several positions of power that need to move on (or in some more extreme cases, be prosecuted).
Thankfully, the monetary cost of this hasn't really had a large impact on our family. We have really good union-negotiated healthcare coverage. That lets us be 100% focused on life skills and communicative based positive outcomes, wherever form they come in.That unfortunately is one of the big threads that runs through the treatment of autism, both within the US, the UK as where I am, and the world globally - there is a simple lack of standards, both in the sense of quality but also in the sense of consistent understanding. Not helped that, if you're having to spend hundreds or thousands - in some cases, hundreds of thousands - of dollars or the equivalent thereof upon treatment, whether for yourself or for your loved ones, you don't want to feel like you've bought into something ineffectual, or worse, harmful. And that makes actually discussing the merits of any given methods difficult because they're tangled up in webs of sunk cost fallacies, successes vs failures, and just... differences in definition that are assumed but often not clarified. You're already seeing how frustrating it can be to navigate on someone else's behalf, so I hope you can sympathise with how difficult it can be navigate for one's self.
I'm behind any form of effective communication that my son can properly leverage. Text, PECS, Speech, whatever it is.
Yeah, I'm not into policing my sons physical "quirks", hand flapping, running his laps on whatever he's doing, etc. I'm not really worried about it. The way I see it, that is his way of expressing excitement in whatever form it is. When he gains a more effective way of communication, he may use those means to convey excitement instead, but it's not much different than me jumping up and pumping my fist watching a sporting event.And like, I say all that from a relatively fortunate position. I am open to the general broad idea of some degree of conditioning because I can recognise treatments vaguely along those lines that have functionally proven useful to me - I have this little hand gesture for example which basically pavlovs me into calming down, and I had to use that when dealing with my phobia of crisps - as delivered by clearly competent staff who truly wished the best for me. That is, unfortunately, not what a lot of people in this thread, and around the world, have received.
That said, I would pay a large sum of money for a coping mechanism that my son could use when taking a bath\shower. Whew...