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UGH!

I’m sorry but IMO this kind of hopeless thinking and mindset is why severely autistic kids are being murdered by their families…makes me want to vomit.  I heard the best explanation for autistic peoples meltdowns/behaviors the other day from a young woman (admittedly “high functioning”) who explained it like this…she likened meltdowns and behaviors to an infant crying…the infant can’t handle whatever is going on and cries because thats all that they have the ability to do…would you force an infant to stop crying? and how? yelling or trying would just lead to an escalation and more crying…would you punish them or think less of them for crying…how about we fix the infant crying epidemic in this world…99/100 infants cry…we need to find a cure for infant crying NOW!

Ok in all seriousness though, this is not the worst article I’ve seen by any means but has all the common elements of mainstream autism “education”…yes I understand Autism is hard sometimes I live it every day…maybe a lot of the time depending on your situation.  I have an Aspie who never learned coping mechanisms and has massive meltdowns, and one of those non verbal but extremely intelligent ones she talks about who is teaching himself coping and had all the early intervention (well sort of…standard therapies only he doesnt get “autism” therapy) but cant talk and still won’t wave bye bye…so according to the criteria am I “lucky” or not?

Articles like this and other mainstream autism literature lead parents of more severely autistic children to believe that there is no hope and that they’re going to be miserable the rest of their child’s life until they die and then their child will have no one and who knows what will happen? Am I saying that loving and accepting your child, and trying to listen to what they say (with words OR actions) and give them what THEY need (not necessarily what you’ll hear from every direction that they need) will magically turn them into a less difficult autistic child who will suddenly start speaking full sentences? ummm no…I have no idea…I think that a better quality of life and a more peaceful existence is possible…the point is this:

Parents go to the experts and mainstream ideas looking for advice…that crap is what they get…so tell me what happens then? Because they were basically told by someone with some kind of credentials (who of course must know what they’re talking about) that they were going to be miserable for the rest of their life and all they can do is hope for a cure …thats what they believe…and when you believe you’re going to be miserable and shackled to this child for the rest of your life with no hope except for a cure then guess what happens? there is about a 99% that you are going to be miserable and hopeless and overwhelmed by the thought of this being your life forever…and we wonder why kids die?

I’ll reiterate what I say every…single…time…READ what autistics themselves have to say not all this BS (and the list of parent autism bloggers who “get it” is fairly short at this point so be careful with those).  Yes, a lot of the bloggers are “high functioning”, but there are some nonverbal ones too…people who used to be thought of as those poor ppl in need of a cure she points at but who finally found a way to say “that’s NOT who I am!” and even a lot of the verbal autistics blogs are helpful in just understanding how the autistic mind works in general.  USE them to get into your childs head…to get a jumping off point, to get ideas…somewhere to start.

Here we go again…and presuming competence?

*note: I started this post on Mon afternoon…got distracted by the circus that my life can be multiple times and am just now getting back to it.

Poor monkey is sick…started early am Sat with diarrhea and vomiting that ended about 9 or 10 but didn’t perk up til after nap (if he’s obviously sick then he’s sick bc not much knocks him down) and a slight fever, sat evening and sunday seemed fine but found a small diaper  rash, yesterday he woke up early with no obvious symptoms so could only guess that his tummy still wasn’t back to normal because he was kinda fussy.  He fell asleep before school…had to wake him up to get on the van.  Came home from school and was acting kinda strange…had almost 103 temp…it would go down but wouldnt stay down.  Ok so this morning had to call him into school but his temp was under the limit so possibly tomorrow he can go.  Anyway all this just as a background to today…

I have always belived in his intelligence and when I read various articles about presuming competence i was like “YES!” This is what I’ve thought all along…my son is intelligent even though in some ways he can’t show it, and needs to be treated this way.  I can’t think of how many times I’ve been frustrated by the testing system telling me my son was just a fraction of who I knew him to be (but that’s another post alltogether back to the point).  Reading autistics blogs and books especially from non verbal people like Ido and Amy Sequenzia (find some of her work here and here) had me rethinking the presumption of competence, because honestly some of the things they could do and not show at early ages were amazing! I started wondering if I was selling my son short by only assuming he was intellectually on par with a “normal” 3 yr old…and started just accepting things I though were coincidences (because he “couldn’t possibly” have done that intentionally at his age) as purposeful…I’d rather give him the benefit of the doubt than underestimate him.

Anyway all that being said, as I’ve already stated, he seemed to be feeling better and fever was down.  He wanted something and since I have been trying to work with him on using his talker (AAC) more rather than relying on us to understand what he means just through gestures and dragging us around the house, I had taken him to it and asked what he wanted…”hospital” ummmmmm ok son…what do you do with that? While still contemplating this we go on about our business, with mommy trying to figure out what to do about that statement, and he wants something else (I forget what but I knew at the time).  Once again I take him to the talker and ask him to tell me that way…he doesn’t ask for what he wanted just a second ago but instead says “go to nurse” aaaaahhh! Ok neither of these is anything hes ever used nor had occasion to use, we’re wondering lately if he can read (another post for another day), and we’re presuming competence, so now what?  What do you do when your sick non-verbal kiddo says “hospital” and “go to nurse” do you take them?  I didn’t. If it had been the day before when he was so sick I might have, was it the wrong thing? I have no idea! Did he intend to say those things…well, kind of coherent to just be coincidence and he was purposeful in choosing them…they weren’t mishits.  Was he reading the words, or looking at the pictures and assigning his own meaning? No clue. Someone later suggested maybe I should have talked to him and told him that although he felt bad he probably didn’t need either of those.

I guess the point of all this is, it can be difficult sometimes to have an autistic child, especially a non verbal one…BUT how much more difficult is it for them, when they manage, through all the physical and wiring problems, to tell us something and we’re not listening.  Something I’m pondering lately and trying to improve…