Wednesday, September 24, 2014

Entry 5: For Every Carly There’s 1000 More

Disclaimer A

March. 21. 2012

Carly Fleischmann rocks! She really is a miracle, but also proof of what's likely really in the nonverbal autistics' mind. I bet it’s often no different to the verbal autistic. However, she's not the only one with a story like hers, and she's lucky to have found a way to communicate. Many like her do not.

There's a lot of other Carly Fleischmanns out there whom are not as fortunate. They may not have such supportive parents, or they simply may not have ever been able to finally found what clicked. It's like when Helen Keller found her connection, that say at the water pump. Carly found hers one day, at a keyboard.

Carly's dad is a hero in his own right. He firmly believed in his daughter, despite what therapist after therapist told him. They told him that Carly was likely severely intellectually delayed, and that she would never communicate, at least proficiently.

But he didn’t believe it….he knew different in his heart. So, he spent thousands of hard earned dollars on Carly's therapies until a breakthrough genuinely occurred. His heart had known this from the get go.

This man is a hero to his daughter, as well as to the autistic community. I say this because his perseverance, his staunch belief, and no doubt a certain set of lucky factors too, proved the truth. I feel is this is likely the truth about every nonverbal autistic person.

I say a set of lucky factors because in retrospect, there are many persevering parents like Mr. Fleischmann too, and they don't always manage to fully reach their child in the ideal way in which Carly was reached. They may try everything, and it just doesn't seem fair. There are more factors to play in this, much of which modern science is taking too long to get on with finding the answers for. However, having parents like Carly's dad certainly maximize the positivity of the outcome.

There are other autistic kids out there, who are blocked by a slew of barriers, and painfully kept from optimizing their functionality. There is a lot of neglect, and even abuse. Some of it is blatant, but a lot of it is inadvertent and due to parents not knowing what to do.

This is sometimes an excuse, and sometimes not an excuse at all, it depends. There is a lot of parental resentment, whether it's consciously realized or subconscious. There is a huge lack of resources, proper education to increase awareness, lack of research, lack of societal acceptance. There is too much fear, and not enough love.

The worst offender of all is: Money. Let's not forget. Money money money makes the world go 'round. It's to the extent of making or breaking lives and beyond. To me, if feels so wrong, though that sounds like the statement of a child.

So for every one Carly, there are 1000 more. I think this ratio may be, sadly, potentially accurate. There are 1000s upon 1000s more severely autistic kids without such blessings who are nonverbal and otherwise very challenged. They may be sitting in their homes, or even public institutions, throwing themselves on the ground, banging their heads against walls, with their teary eyed, broken-hearted parents watching, as they feel helpless. They may be receiving horribly substandard care.

They are often completely written off as intellectually delayed, while understanding every word you say, how painful that must be for them. So they react, crying, shaking trapped, alone, and degenerating in health. Carly explains exactly why the head banging, and other seemingly self-injurious stims were done.

I understand some of the why myself because, as a child, in the privacy of my own room, I would throw myself backwards on the bed. Sometimes I nearly gave myself whiplash. I explain why I did it, in my own book. However, I am not as affected as Carly, it's just that I am able to understand where it's coming from…at least a little.

There is a serious problem here.

Again, for every Carly, there's 1000 more. The most dangerous part is, the healthcare system does not understand how to treat autistics medically. They do not understand nearly enough about autistic people's sometimes very serious but divergent types of health afflictions.

The medical systems are not yet willing to acknowledge that autistics are more prone to, and are likely walking around undiagnosed with, certain types of health conditions such as, autoimmune disorders, blood sugar/metabolic disorders and diabetes, genetic disorders, connective tissue disorders etc.

However and furthermore, what people do not understand is that autism itself is not the disease, it's the kinds of health issues, and the environment, that affect many autistically wired people. This is, in general, is what I feel causes the neuro-inflammation, which produces the more profound effects and challenges, in which then all-too-often renders the autistic wiring a clinical disability.  

So, change the environment. Change the food. Change manufacturing tactics. Change healthcare. Research further. Make more of an effort to understand the way we communicate, so as to not keep continuously, inadvertently mistreating and neglecting us. Shift the focus away from annihilating us via eugenics. You don't know what you want to get rid of, you really don't. Dust off the gems, don't throw them in the garbage. Don't throw the baby out with the bathwater. Lose the fear, gain a better world.

The more autistic people, including nonverbal adults (when and if they are able to find their voice) can attest to this, the more people will be pressured to listen to us. How and why these issues affect us is not understood yet, let alone pointed out by most. So, is neuro-inflammation an obvious enough side effect for ya? This is why I say get on with research.

It'd be wonderful if money could be raised and more mutual help set up. This way more evenly fair accessibility to therapies for autistic children of all socio economic background could be provided. If there's a will there's a way.

Why should ability of an autistic person receiving therapy and help, for problems the current systems/environment is causing, be based on their caregivers socio-economic status. Does that sound fair?

Making autism therapies a dollar sign, and turning into an Industry sounds like obvious greed. It sounds like the epitome of taking advantage of the situation. Sure, there are some poser-socialist options. Yes, every kid gets some therapy, but the quality of it hugely depends on caste. It really does when it comes down to it.

Is this fair? To punish a helpless human being, affected by no fault of their own for their family not being of means? This isn't about autistic people being a burden to society, it's almost about society being a burden to us, as it stands. Society is failing us, we are not failing society. To turn it around on us is synonymous with a lion picking on a mouse.

Well, I say this: if society fails us, we should form our own societies. We should form our own strategies, discover our own varying strengths, and help each mutually. All it takes is for us to talk amongst each other, SSABU, sharing stories all between us, and finding answers unsaid.

It is clear that the great mind of a nonverbal autistic person has a greater chance of being unlocked, with the ability to access incessantly recurring therapies, as well as the right approach to health and nutrition.

However, what therapies are the right therapies, can we be empowered to know these ourselves, instead of relying on the big autism therapy biz? If it weren’t segregated in this way, we'd have more tools by now. Keeping from us is becoming increasingly inhumane.

I say we look for the tools anyway, by ourselves, as well as look into forming more mutually funded projects, including our own research. We must reject the notion that only professionals can help us, and our children. We are we, and we know best! Let's not keep giving our power away to big business, so that many continue to suffer lack of accessibility, if they're not of a certain economic status.

When I say this, I include the wealthier parents of autistic children. Show your support for all autistic people, by assisting towards this kind of change, rather than fuelling oppression.

Yes, we can search ourselves, and be empowered to do so. Fear doesn't need to hold us back. It's the same kind of fear propelled by doctors, when they try to tell you that you need a medication. Sometimes you do need it, much of the time you actually do not, and it may even cause further damage.

I'm not saying that some therapy services aren't worth the money, especially used in order to learn from initially, but then later practice independently. However, there are a lot of phony's out there, taking people for a ride. These are people way too vulnerable to be taken advantage of, so shame on the autism therapy Industry. A lot of it's somewhat corrupted, vis a vis sensationalized, overrated and extorted. It's more so than people realize.
I say to those who can afford it, stop giving it power, by more carefully discerning how they use it.

Ultimately, autistics do very well on a clean diet, free of dairy, gluten, sugar, simple starch and GMOs. I almost thing this is priority over anything else. People may not want to make changes, and may argue with me, but thesis what I wholeheartedly believe. Though no individual’s dietary needs are the same, investigation might be well worth the money if it can be afforded.

If not, there are other ways to find out, using trial, error and our instincts. When I am able to eat the right kind of diet, I don’t even have any symptoms of things that can be mistaken for, and even be (as comorbidity), mental health issues. It’s hard to keep up this diet and I can’t always get it perfect. The better it is, though, the better I am.

One day I’ll share more about these. It’d be hard to explain because I draw diagrams, web maps, and designs to comprise formulae that work synergistically.

I do similar things with foods, in the way of alchemy. It takes work though, and if functions such as attitude (psychological depression) and executive functioning (neurological) are down, it can get tough to keep on top of.
The first, believe it or not, is actually worse…but more easily corrected in some ways.

However, I'll tell you the cost is stressful. This can bring about the attitude part, at times, but what I do now is try to work with what I have and have faith in the rest. I try anyway, even though my analytical mind can eat at me whence thinking ugh but I could get this, and use this, if---

I do without much in the way of luxury, some days I blend together whatever I have in the house, that won't trigger my health. It's like a hypoallergenic Oliver Twist meal, sometimes. We have to do our best, but it sure is hard, and ultimately, the richer you are, the easier it is.

Many people don't have the energy, or even ability (it’s simply not their strength) to make such an effort, and thus, they suffer. I’d like to one day help those people, by writing about strategies to do your best on the cheap. There are thousands upon thousands of great people either intrusively held back, or completely locked away, because of money, of course.

Yes there are others like Carly out there, but without the finances or caring family members. They are so vulnerable. A moment of silence for them. Then, maybe another moment to think about the possibility that people can help, especially we people.

When I say ‘We People,’ it does not include the greedy corporates and soul-less, materialistic type As who want to stay as they are, and don't see why they should change their ways. ‘We people’ describes anyone with a conscious heart, anyone who believes that awareness, love and care can produce the right movements leading to the right changes. People that believe the system needs to make changes and to change in itself. People that believe we should be sharing a little more than we do, and focusing on material a little less.

There are brilliant minds out there in this generational wave of autistic kids, and they/we need your and our help. If we open our minds and hearts, doing whatever we can to give these kids a voice (regardless of their socio-economic backgrounds) it'll do our globe a lot of good as it's intended to.

- Rose Whitson-Guedes

Diary of a Girl Outside The Box is also available as a fully edited/pro formatted PDF, for more info see 

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