I try so hard to stick with articles and talk about issues in the autism community, without letting things become personal. Even after this post I’ll still be able to say that, but less heartily as I once could. In a way this is being taken personally, even though none of this is directed at me specifically, nor do I think I have even made it on; yet that wouldn’t matter. This is being directed at parents, people trying to treat autism and basically anyone who does not agree with what ‘self-proclaimed’ aspies say autism is. I’m not just talking about this Blacklist, this has been going on for some time and will continue to do so. I hold little hope for it being resolved anytime soon but I know there is common ground between us and real adults on the spectrum. I know this may seem harsh to just divide it to these two groups but that is what I’m discussing at this moment, so that is the division. This isn’t about vaccines…not really.
So you have one group; parents of children with autism who are trying to ‘cure/heal/treat’, whatever word is popular these days. Vocal, sometimes angry, mostly well-knowledged and completely well meaning; they are warriors, in all sense of the word.
Then we have the other – not limited to- self diagnosed aspies. They feel that by looking for a ‘cure’ or treating or even researching in the wrong directions; we are trying to create a pre-natal test, wipe them out, get rid of autistics everywhere and on and on.
No other ‘disability group’ have I seen that has this kind of drama; it’s like being back in highschool ( not like I was there most of the time anyway) but I sure as hell knew about the mentality that happens when you put too any people together for a length of time. So why is this so different than other groups. Why aren’t people with MS, cancer or diabetes fighting amongst each other?
How about a different perspective, we’ll shift the same type of disagreement over to the diabetes group. Type 1’S and type 2’s are going at it, one believes that they are the ‘true’ diabetic while the other is just ‘diabetic symptoms’ or ‘acquired diabetes’. One believes that diabetes is purely genetic (even after years of researching –and billions of wasted $’s- has shown this to be untrue), while the other believes that something is causing diabetes to happen and is screaming to the greater health care charges to look into it (they are even willing to provide as much information as possible and to participate in any tests required). One side is proud to be diabetic while the other just wants to be rid of all these horrible health issues accompanied with diabetes and live a life like they are supposed to – free to run, play and eat how they want-. Now suddenly the ‘proud’ ones think the ‘ill’ ones want to wipe them out, to take away their diabetes; by force if necessary.
See, isn’t that ridiculous? Yes I am making a mockery out of this because it is stupidity, plain and simple. Now we are wasting time dealing with this crap, creating groups, trying to shut down discriminating pages; yes we come together even more after one of these bouts, connecting to new people and all that but our energy is taken away from more productive means. Then there is the part causing me to become highly defensive regarding my children. See I’m a momma bear type, you get in my face or provoke me and I’ll deal with you in as light a manner as possible. Touch or offend my cubs and the oversized paws with huge skin shredding claws come out. Not a pretty picture and usually it doesn’t have any effect on me at all since people generally don’t say squat about my kids let alone offensive remarks. I’m not alone in this, other moms and dads are the same way and we would fight until our last breath for our child.
So there comes a point when enough is enough. We’ve been called crazy for believing we could treat our children, called horrible parents because we search for answers, been told that our children should be taken away, that they should be felt bad for, that they deserve better and that we are monsters, bullies, ‘like nazis’ and that we wish to eradicate the world of those with autism. All of them and also kill all babies that will possibly have autism, that will be tested by some imaginary means. Yes, I am trying to make a mockery of this in hopes that it quells my anger, because frankly; I’m right pissed off. This is no longer just some people who are so attached to the ‘my child was born this way and I would never change it, shame on you for thinking you should and trying to find a cure’, no this is becoming an outright attack on parents who are using all their energy to not only help their own but also help others as well as fight the system that is hindering these kids more than it’s helping.
You want it in black and white, here you go
- These parents spend all their child’s waking hours working to earn money and/or caring and helping their children
- They sacrifice their own time and luxuries to make sure that their children are living happy healthy lives
- These children are not neglected nor are they under duress and they certainly are not being punished for stimming or other behaviours deemed weird by the general public
- When these children are settled, sleeping, at school or busy with a lone activity; these parents spend that time researching, learning, helping and fighting for things that would benefit their children
- They end up possibly losing friends, family and partners on their journey but they do it for the betterment of their kids
- They spend countless hours worrying, planning and trying to figure out the puzzle
- They also sit outside their kids bedroom door at night, marvelling over the profoundness of these kids, of the funny quirks, the courage and the love they have to give
These are not monsters doing experiments on their children. These are not people looking for some way to rid the world of all things autism. They are just trying to make their children healthy. Then the whole prenatal autism test. Seriously, there is no such thing and I highly doubt that there ever will be. You can keep going around trying to tell everyone that it is hereditary, that it’s in the genes but you have absolutely nothing to back that up. Let’s see, they’ve been looking at genes in regards to autism for what 30+ years now? Could be wrong; may only be twenty. What have they found, really? Over 100+ different combinations found only in those with autism. Hmmm, well that’s it folks, problem is solved. You heard it, all genes that are passed down and no way we, can do anything about it. So this test is, where exactly? Oh that’s right, you don’t know the specific gene, gene sequence or chromosome that is affected and therefore you cannot produce a test. But if by believing you that it is in fact hereditary, we should have no problem creating a test prenatally, since by your definition; we can already test now right? Of course this doesn’t make any sense. If autism was truly ‘passed down through generations’ we would have found ‘the markers’ by now. What’s the point in the end anyway, we don’t have the means to treat genes specifically.
Then again, everyone always misses the simple point; genes are the end result. They are like the crime scene; you can see how the victim was murdered, what surrounding areas were affected by the scuffle that ensued and yet; without the murder weapon, you cannot accurately solve the crime. Genes are affected by numerous things. They are turned off, on, can mutate and all that but they do not do it on their own. Your genes do not just ‘spontaneously mutate’ but rather are caused to do so. An outside force affects these genes and by looking at genes we can merely figure out which areas are being affected. We do not have the means to do more than that. We will never be able to create a prenatal test for autism like we have for DS. This is just not possible.
However, an after test is entirely possible but would be very flawed since not everyone under the umbrella is affected by means similar enough to measure; that I know of. There are a few tests that have been around; metal testing – all children I’ve heard of being tested, have tested high. I don’t know any adults that have had themselves tested. There is also a urine test developed – not sure if it’s widely used yet or not- that measures opiate levels and other levels – the drawback is that not every child with autism has the same problem with opiate foods and thus some will test negative and still undoubtably have autism. This isn’t even taking into consideration regression cases; I’m extremely curious as to how these children would test before and after regression. Of course the only recognized test for autism is based solely on behaviour and it will continue to be as long as people like those I mentioned earlier continue to chastise parents for seeking answers and trying to help.
It’s very frustrating to watch your child in pain and then have someone claiming to have Aspergers tell you how wonderful autism is, what great abilities it brings and how these health problems are just made up bologney that disgruntled parents made up. How autism is really just evolution and that all the super smart, slightly lonerish people have it, like Einstein, Bill Gates and the like. Yes sometimes parents can become overwhelmed by their situations and the main reason is the lack of support they receive because of these concepts being spewed by people who are literally self diagnosing themselves. I enjoy talking to people that really have Aspergers. We want alot of the same things and fight for a better understanding or what autism is and how people with autism are just that….people. I love hearing the firsthand experience of it and learning more about how my son may interpret things. These people also know that autism isn’t all flowers, neon lights and super brainiac abilities. Leave the sparkles and beads for the gay/lesbian parades and really look at the situation. What adults with Aspergers are experiencing IS different from what are children are. There are areas that cross over similarily but the children today seem to be affected worse or maybe the adults bodies have adapted over time. We don’t know and will not know as long as; individuals self diagnosing themselves, to be part of the smart people with abilities, that are more evolved than ‘neurotypical’ people, keep falsely crying bully every time a parent says autism is treatable.
That’s the gist anyway. Now there are ‘mobs’ and new classes of bullies. People are again reporting others because some disgruntled adult tells them that these individuals wish death on those with autism or some other similar, blatant lie. Then parents end up having CAS/CPS called or their homes are stalked, vandalized and just when does it end?
Is research being misguided because people still believe that it is strictly a brain or psychological problem? Is this in fighting distracting us from pushing for better laws, funding and resources for those with autism? Are children missing out on treatment because their parents are made to believe that there is absolutely no hope and that anyone who tries to give them, even a sliver of it; is made to look like a hater of those with autism, bent on trying to change their personalities, essentially take away who they are? Yes to all on many more. This isn’t just highschool name calling or some unconsequencial debating. This is attacking, detouring and ultimately holding us back more and more. Yes I could make it on the new list if I wanted to but it is already enough that I feel the need to waste my energy calling attention to this.
There of course is always a positive to negatives like this. If you are a parent of a child on the spectrum and are trying to help said child. This list will provide you with names of similar minded people, others who fight with every ounce they have to make the world a better place for their children and they are a valuble resource. So visit the page, add everyone on that list, report it then move on.
In the autism community there is always regression, it’s our ability to move past these that makes us the warriors that we are so aptly named