Autism Buzz...kill

Just spent way too long writing a long reply to an irritatingly wrong article on autism on a site that styles itself as "intelligent" (HA HA HA), so I might as well share the results here...  What sucked the most was that until I submitted the damn comment, I couldn't see that responses aren't visible from the article, so I basically stayed up until almost 8am for nothing! 
Yikes... Most of the information in this article is based on old stereotypes and misunderstandings that arise from non-auties not being able to 'read' autistic people.

-- The repetitive movements are actually a mixture of how we natively express emotion, calming ourselves when stressed out or upset, and the need to use a physical sense that is hyposensitive or to feel where our body parts are  at if our mind-body map is weak.  Likewise, we're not having trouble with emotions or just showing aggression, we're reacting to a mix of how others are treating us and high stress levels from a hostile environment.
-- Our eye contact actually is much the way other species are wired to use it, not merely avoidance. That's why submissive or often-bullied auties find it extremely anxiety-provoking, we all find it much harder to think if we're making eye contact; since even milliseconds of difference are noticed by the brain, and faking eye contact takes some degree of conscious effort, NTs can subconsciously sense if it's artificial.
-- Social interactions can be improved vastly by including non-speech methods of communicating (teach the AS kid sign language, have a portable speaking keyboard or tiny word processor, etc.) and teaching NT kids that the AS child is different-but-equal (like horses and ponies, cats/dogs, etc.), then organizing activities that are also compatible with autistic parallel, like video games, reading together or listening to a story, arts & crafts, etc. It's also important to have the autistic kid actually spend time with other autistic people; otherwise they grow up feeling all alone in the world since nobody else their age seems like them.
-- The "aloof" appearance is because the way we're designed to socialize involves doing things alongside others, rather than interacting directly; if the kid's playing then he/she is waiting for another to engage that way, if not then they're waiting for a receptive signal or afraid of being bullied.  Withdrawing entirely also is pretty reasonable if the autistic kid has gotten bad receptions repeatedly, and finds NT-style directly interactive play stressful or unappealing. Best solution there is to maybe be around AS kids a few times instead, then add in NT kids that already show an ability/preference for parallelism.
-- We definitely aren't "resistant" to learning! We learn differently, so what works for NT kids won't necessarily work for one of us; most of us also prefer to work for long periods on a single subject, which isn't how NTs are taught. We automatically imitate autistic people as little kids; some of us also imitate the speech of other adults.  Expressing one's imagination is a lot easier if the kid is able to use the medium he/she is inclined towards: drawing, rearranging models, music, etc. and using a keyboard for writing rather than pencil/pen (which is very hard for most of us).

-- Psychiatry is now clear that Autism, Asperger's, PDD, etc. are the same general creature, and what somebody is like at one age isn't a useful indicator of the past or future. This will be formalized in the DSM-V as a single 'spectrum'. Though it wouldn't appear in the DSM, it is now acknowledged that autism is a neuro-developmental condition, not a behavioral disorder.
-- We become autistic even before the fetal stage; research shows subtle but visible differences from early infancy.
-- It can be important to recognize that just because somebody starts appearing more autistic doesn't mean at all that they're "regressing"; more often, it's that we're under more stress and thus need to do more visibly autistic things to cope. Also, with autistic development, one area will mature for a period of time, then the skill will stagnate and even start to weaken from disuse while another area improves; when the ability being ignored is speech or self-control, it can look like we're regressing when it's just part of the way we progress.

-- Autistics are wired to communicate & interact verbally and nonverbally with autistics like us, just like neuro-typicals are designed for their kind. Not only are we not "deficient", our nonverbal language isn't specific to one society the way NTs are (like folk from China finding direct eye contact offensive while Americans think it's required).
-- Sensory (including vestibular) hyper/hyposensitivity not only isn't linked to autism 'type'; most of us have some senses that are very strong, and others that are weak.
-- Autistics aren't aloof; we do show affection & try to communicate, just autistic-style. For example, many of us show we care by watching somebody intensely or doing things for them, and communicate by arranging our favorite objects/toys certain ways or relaying carefully-considered related factual information.
-- Search the web for the "Rett Devil", she has it and knows all about the topic. From what she has said, just as autism is normal for people with my VACTERL birth defects, it is in the Rett's kind as well.

-- In treatment, it is VERY important to distinguish between something that truly helps us and something that only makes us seem less autistic. "Helpful" would include teaching the autistic to help identify things in their environment or how they're treated that cause them discomfort/pain and know that they have the same right as everyone else to change it! (Too often, "therapy" means teaching us that we don't have the same right to freedom from discomfort/pain or to refuse physical touch, which are dangerous beliefs for already-vulnerable kids/adults.)  On the other hand, the more energy we spend on trying to look non-autistic, or the more drugs are pumped into us to achieve that, the less we can devote to developmental, psychological & academic growth, and the more likely we are to become severely depressed.
-- Drugs can be helpful IF they are alleviating a problem like anxiety or depression that *isn't* being caused by something that can be changed (and just because the autistic doesn't say or point to the cause doesn't mean it isn't there). They're harmful if they keep us from showing that we are upset or in pain by stimming (rocking, etc.) or doing anything about it. Also, drugs that are neuroleptic/anti-psychotic are also VERY dangerous to autistics for some reason: in addition to making it much harder to think or move, they mess with the autonomic nervous system that's in charge of our respiratory & circulatory system: do a web search for Autistics Against Neuroleptic Abuse for more info.
-- In communication therapy, it is very important to also value non-speech methods of interacting (like typing) as the ability to communicate everything needed is more important than how it's done, and to include the autistic's native "parallel" method of social interaction as it's equally valid & there's no lack of people that prefer it. (I'm not sure where you got the idea that we have "emotional barriers" to communication, but the only "emotional" barrier would be a possible logical fear of being mistreated or rejected if it has happened in the past.)
-- What behavioral "therapy" does (speaking from the inside) is push us to not show our emotions under any circumstances, and to put on a very fake act at all times around other people for fear nobody ever likes us. It also takes time/focus away from the child's natural development & education and redirects it to having the kid focus on surface appearance. We actually *do* develop and have a strong desire to learn, we don't need to be bribed to do so. One parent described it well after halting ABA therapy of her son: if an autistic isn't doing what you expect, like giving a hug upon seeing granny, then either it's because they're not developmentally ready (in which case what they learn in ABA is meaningless rote memorization rather than development) or it's because you're expecting them to do something that's not what they're wired for and possibly even painful (in which case you need to reconsider whether it's important or just what you're used to).
-- We aren't violent unless we've already been dealing with a very high stress load (often things a NT won't notice) then have more piled on, and can't get away from the cause. This is one reason that it's vital we be allowed or even encouraged to do our 'autistic' things like hand-flapping, focusing on a special interest, etc. as they're how we reduce our stress & overload levels so we don't have a meltdown.

-- The many parents I've interacted with, including my own, say that they raise (not "deal with", which is negative) an autistic child, and that the insecurity/uncertainty/etc. that's normal for being a parent is horribly magnified by the media/medical industries that profit off such fear. They also say that it is not insecure or uncertain for the child at all IF they are being raised with loving acceptance with guidance growing naturally, like I thankfully was. They also agree with us that "intervention" harms our ability to truly function & have a good life: it devotes us to a surface act rather than real growth (including academic & talent), plus teaches us to tolerate unhappiness/pain & that nobody can ever love us, leading to self-hatred and not leaving bad or abusive relationships.

Those of us that actually *are* autistic, including those that type as they can't speak (like Amanda Baggs, Tito from India - I can never spell his surname, Sue Rubin, etc.) or that are classic but now can speak (like me) do not consider being autistic "devastating", an inferior kind of brain to have, or desire a cure. Those of us that were raised with acceptance have had much more personal, academic, etc. success and only developed depression for fairly normal reasons like having an abusive partner -- those of us that were subjected to therapy, however, developed depression as kids, were bullied, had academic & career problems, and in many cases have been homeless and/or attempted suicide.

I have a collection of autistic bookmarks that point to related articles and sites for a few self-accepting autistics' & pro-acceptance parents of autistic kids, if anybody wishes to learn beyond the stereotypes & propaganda:

1 comment:

  1. Hi. I would be very interested in communicating with you directly in emails if you are willing. You are the first person who I've found who has a VACTER-L birth defect *and* autism. My son, who is now 18, was born with Tracheoesophageal Fistula and Esophageal Atresia which were repaired the night of his birth. He is on the more severe end of the spectrum than you appear to be. Would you please contact me at qqlauraqq at gmail?