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Something another blogger replied to me

December 21, 2011

I have to disagree with you, too, athenivanidx. The diseases you mentioned (malaria, AIDS, Ebola) are considered pandemic (if you look in the dictionary you’ll see the various definitions of epidemic). And, I think your comment about obesity is insulting. Obesity is a disease and it is not necessarily an acquired condition. For someone who wants to be treated a certain way and referred to in a certain way you should be more sensitive to those types of things.

Oh, and you said you didn’t think autism was a disease like those other things. Here’s the definition of a disease:

“A disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.”

Autism IS a disease.

I believe the number of children being diagnosed with autism nowadays IS an epidemic. And, regardless of the word used (I’m not going to get into a battle of semantics) this is a major concern for our country and for the world.

I’m the parent of a three-year-old boy diagnosed with autism more than a year a half ago. My wife and I are of the group of people who believe that vaccines played a big part in our son being autistic. If we had the choice to do it again there’s no way we would have let him get the shots at 18-months-old. We have refused any further vaccinations for our son and don’t feel like we are doing a disservice to him. Until the drug companies, the government, and the CDC show honest efforts to make vaccines safe–and are completely transparent about what’s in them– I will live in doubt.

The way they try to force vaccines on us seems to be less about concern for our health and more about profits, control, and other motives. I was forced into getting a booster MMR shot so that I could take a couple classes at a local college. My MMR from when I was a child apparently weakened. At least that’s what they told me. I researched the possible side effects of this shot on an adult and saw that one was a rare chance at sterility. This was at the same time my wife and I were trying to start our family. I took the risk and got the shot but if I would have become sterile would anyone in the drug companies, government, or college have cared? I was an adult and able to speak up for myself…children get no say in these issues and if they don’t have strong, well-informed parents they can be harmed very easily.

I have to make another comment about how you said that people with autism wanted to be referred to as an autistic person and that you were proud of being autistic. I don’t think you should be speaking for all people who are autistic (plus that’s just a label–I have asthma or I’m an asthmatic…I don’t care even way). Also, it’s important to be proud of who you are but not because of an affliction you have. Be proud of being a human being and of being a good person. I’m proud of my son regardless of him being autistic or if he were “typical.” And my son is proud of himself (yes I can tell) and he knows nothing of being autistic.

I’ve read many things written or said by people with autism and they mention “neurodiversity” and “don’t try to cure us” and they often seemed very angry with parents who are trying to help their autistic children. I realize there are probably parents out there who, when told their child is autistic, don’t know how to react to that. They don’t know how to raise them, or treat them, or communicate with them. Some may even be so mentally unstable that they stop loving their child or do harm to their child. I think those are rare but they seem to be the types of people/parents that are talked about most (the public likes to hear bad things and ignore the good). Every one of the parents at my son’s developmental disabilities school are dedicated and loving to their children and their needs as autistics.

I believe it is every parent’s responsibility to do whatever they can to help their child when they are ill or when they face a challenge. The minute my son was diagnosed with autism I knew I would do whatever it took to help him get past it. He has been getting ABA therapy since January of 2007 and he has made much progress. His teachers are optimistic about his chances to go to kindergarten with other kids his age. That is our goal for now. We’ve had only person so far make a negative comment about my son’s prospects for the future (”He’ll never be a lawyer but there are a lot of good trade schools.” ;) and my reaction to that was $&&@*@# that! Never, ever tell me or my son what he can’t do. I believe he can be whatever he wants to be. I love him with all my heart regardless of what he does.

I think it’s a joke that I should be looked at poorly by some autistic people because I want to “cure” my son. As I mentioned, I have asthma. Should my parents have not wanted a cure for me? Should I not take my asthma medicine because it changes “who I really am?” Bull! I’m a well-informed, loving parent and whatever I feel is safe and productive to help my son (and yes, cure him) I will do in a second.

My son has a great personality. He’s fun and smart and loving. I believe he would be that way even if he weren’t autistic and, if anything, his autism holds him back from being those things even moreso. We treat him no differently than if he were “typical.” Communicating with him is obviously our biggest challenge and understanding his stims can be heartbreaking. If he could talk to us I believe he would thank us for helping him get the ABA therapy.

I’m sorry if this comes off as confrontational or angry (or a little off-topic) but I’m tired of a) not getting truthful answers about the vaccination connection to autism and b) being told how to treat my son’s autism.

ETA: another relic from a few years ago. We’d be interested to know what others have to say about this.

all of us

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11 comments

  1. Wow. This parent seems…incredibly misinformed. I mean, the first mistake they made was falling for the ‘vaccines cause autism’ falsehood hook, line and sinker. Secondly, they seem far too invested in the idea of a ‘cure’ for autism, rather than trying to find ways to accommodate their son and appreciate his neurotype for what it is. :/

    (by the way, it’s great to see you guys updating again!)

    ~Kerry


    • Thanks, Kerry! Its nice to be back……hopefully with some more interesting things in the weeks and months to come.

      Athena


  2. Here’s the short version: Parent, I hope for that kid’s sake that you’ve changed your ways. As regards cures and behavior mod, well, I’ll use my usual retort: when do I get to reach into your head and rewrite you to suit my needs*?

    *As defined by me, of course.

    One problem: it’s possible that the parent may have realized how harmful his “I’m right and you auties can’t know what’s best for you” attitude could be, and changed it up. Not sure if that’s worth investigating.

    Right, from the top:

    1) It would be nice to have the original post (to which this anonymous parent is replying); however, autism spectrum problems are a disorder relative to NTs based on relative populations. Different brain structure and resulting capability differences are only a problem when cultures are designed to fit a specific type of person. Cf. kyriarchy, patriarchy, etc.

    2) Vaccine-based causation has been rejected; the Lancet has retracted the study and the doc involved was struck from the rolls, based on his having conducted the research without proper ethical protocols, for (significant) profit and as part of a court proceeding. Quick cite:
    http://news.bbc.co.uk/2/hi/health/8695267.stm

    3) No, neither AIX, nor Ari, nor Jim, nor myself, nor any other autie should speak for all auties. Neither should parents or scientists. That said, objecting to person-first is perfectly acceptable and the right of any particular individual. [Full disclosure: I self-reference as an autistic person.]

    3A) Labels have power, anon parent. Reading assignment: “I am Joe’s Functioning Label” at Square 8. Here:
    http://aspergersquare8.blogspot.com/2008/03/i-am-joes-functioning-label.html

    3B) So we’re only supposed to take pride in conforming to (anon parent’s?) definitions of being a good person? Autism issues can make that inefficient at best.

    4) Suffice it that ABA and other such “cure” attempts can do more harm than good. I find the asthma angle interesting as, well, I had exercise/cold (temperature) induced asthma and for all I know still do–apparently some people shake the problem as they grow. Rather than take drugs, I simply eased up. Not everyone has that privilege, granted, but in point of fact I could and I did choose to adapt to how my body worked.

    4A) Autism qua autism is not something that is gotten past. I was born autistic, and will cease displaying autism when I reach cellular equilibrium, go to dev/null, assume room temperature, or to put it plainly, die.

    Lack of social skills is a practical deficit which should be indistinguishable from lack of language skills, and taught to a similar degree. Skill deficits are present in all living creatures.

    5) Ooops. NTs, as a general rule, don’t get ABA before kindergarten. Typically not after kindergarten either, for that matter. Parent, you do, in fact, treat the kid differently than you would if he were typical.

    5A) It’s real easy to believe you’re doing the right thing when the person to whom you’re doing it can’t tell you no–and especially where, if they could, you could write xyr off as not knowing what’s best for xyr. It’s common in English to refer to offspring using the possessive: “my” child. Lots of parents lose the safety-catch that the child is their responsibility, not their possession. Things can get quite dangerous in a hurry once one loses that safety.

    Well, that was a lot. Thanks for your time and consideration.


  3. My understanding of this post is that it is not your thoughts but those of someone who read a post of yours and that you don’t agree with it. Is that correct? I quite agree that no one should claim to speak for all people with autism. My opinion of ABA is that it’s like training an animal. My daughter is not an animal! Yet there are some aspects of her having autism that I would like to change like aggressive behavior and the OCD that sometimes seem as if it is enslaving her.


    • Yes, that is correct. Those words are not mine but the words of another blogger. And yes, ABA is rather like training an animal. How does your daughter’s OCD tendencies affect her? What about those tendencies seem like enslavement? I’m not disagreeing with you per se, just asking. Sometimes I too feel trapped by sensory overload or certain thought patterns. It is hard to overcome those thought patterns and they limit the things i can focus on when I am in one of those thought patterns. Perhaps you can look into helping your daughter develop coping strategies for when she is stuck in OCD behavior patterns. I am working on that sort of thing for our system.

      Andrea


  4. Bethany must change her outfits (Which are all exactly the same. We call them her uniform!) about every ten minutes if she is not occupied, a little less often if she is. She even must change them when on outings. I don’t mind it so much at home but it does grate on my nerves some days. It’s quite a problem when out in public because she doesn’t care if there is a private place to change and she is fourteen!

    I would love any ideas you might have about forming any strategies! I think it interferes with her quality of life somewhat!
    thanks for listening!


    • It seems like a sensory issue of sorts. Are all of her outfits made of the same type of material? It could be that after a little while the sensation of fabric on her skin feels too hot(because of body heat being absorbed by the clothes while she is wearing them) and changing clothes gets rid of that hot sensation temporarily until the next outfit gets hot. When she is occupied she won’t notice as fast as when she is not occupied, thats what I gather from your comment. As to the issue of changing in public, thats definitely a problem too. But it seems to me the more productive approach is to figure out what exactly the problem is with her outfits first. Does this scenario make sense to you, of possibly the clothes feeling too hot for her after a relatively short period of time? I’m just guessing here.

      As for listening- I consider that a responsibility as an autistic self-advocate. It is my pleasure

      Andrea


  5. The problem doesn’t seem to be the clothes themselves. She has picked them out and they are all exactly the same, but you may have a point with the temperature! That isn’t something I would ever have thought of myself and she wouldn’t be able to verbalize that. I am really glad that I found your blog. I am learning so much about life from your point of view!


    • Sylvia- thanks for the compliment and I am glad you are getting useful information from our blog!

      I don’t really have similar experiences with clothing that Bethany has, so my guess was just that, a guess. I’m not too sure how to advise you to go about finding out whether it’s a temperature issue either. Maybe you could write the words hot warm and cold and show them to her when you notice her showing signs of discomfort from her clothing?

      I will try to think of other strategies too.

      Andrea


      • Thanks!


      • You are welcome, please let me know what you discover! Can’t wait to hear more!

        Athena



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