Join the Fight Against Autism!

Reader Sheila Hughes writes:

I wanted to make you aware of a fundraiser our family is involved with to help kids like Joshua who have autism.  April 12th is a day we will be walking for awareness and in our case, to support others trying to “tumble down the walls of Autism”.  If you could support our efforts, first of all, by prayer, but secondly, with any sized financial contribution, we would be so grateful.

Please just click on the link below and know that any contribution, no matter the size, is greatly appreciated!

http://panhandleautismsociety.org/give/joshua-and-the-battle-of-autism/

We, ourselves, have benefited by the Panhandle Autism Society, receiving approval for a $500 grant to purchase a Vitamix, which has helped with Joshua’s dietary needs (I can make flour with it, as well as numerous food items that are in line with Joshua’s diet.)  Joshua isn’t too thrilled with the noise, but he sure likes it when I make him sorbet or coconut milk ice cream!

Thank you, once again, for your support and joining with us in the 2014 Walk for Autism Awareness!

  • http://hjg.com.ar/ Hernán J. González

    Ehmmm…. to “fight against autism” sounds to me like “fight against Down syndrome”. That’s an unfortunate expression – a parent with an autistic child might find it even offensive. Autism is not a kind of evil, not even in the physical sense (and we are not even sure if we are interested in “preventing” it).The “battle of Autism” is not a “battle against Autism”.

    • chezami

      Don’t be silly. To fight against polio or some other affliction is not to fight against people with the affliction. PC is stupid.

      • http://hjg.com.ar/ Hernán J. González

        Sorry, Mark, I’m as far from PC as you, at least. Autism is not an illness. Polio is something we’d like to erradicate. Autism is not.

        • Sus_1

          Tell that to the kid who desperately wants to communicate but can’t. Or wants to be able to go to school with their peers but can’t because of the sensory overload.

          • Heather

            I think Hernan’s comparison with Down Syndrome is apt. Autism is a lifelong condition, not a disease that can be cured or quarantined. Various dietary and other therapies can do a lot for managing the sometimes debilitating effects of the condition, and supporting research and development into these things is laudable. So is better public awareness and understanding.

            But autism itself is basically a difference in how someone’s brain is wired, and in and of itself isn’t something to be “fought.” You can want someone not to have to struggle to communicate, and to ameliorate their sensory processing problems, and otherwise have the negative affects mitigated, without wanting them to have a complete rewrite of their personality and interests (which is what actually “eradicating” their autism would do).

            One teenager I know with autism is fascinated by meteorology and will talk to you about the weather report for hours given the chance. The fact that he won’t notice when your eyes start glazing over is part of the autism, but so is his deep interest and even delight in the topic. I wouldn’t want to denigrate the one in the interests of “fighting” the other.

            • RedMeg1990

              My oldest, 20, has Asperger’s or high functioning autism (the diagnosis manual is changing…) He would still be the same kid WITHOUT the Asperger’s, which is why I pray daily for him to be cured of it. Just cured. Gone. Even while we work incrementally at diminishing the more disruptive aspects of the condition.

              • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

                No, actually, he wouldn’t. Without the asperger’s, he’d be a good deal less honest, less generous, less able to focus on his obsessions. He would be a different person.

                I know, because I am autistic.

                • RedMeg1990

                  I’m wondering if you’re extrapolating to an entire population based on your own experience? My Aspie is already a liar (albeit a terrible one because he’s so socially clueless) not particularly generous and only has the ability to focus on wildly useless things like drawing up box scores for an entire season of fantasy baseball. And I probably know plenty of neurotypicals who could get equally invested in that… :)

                  • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

                    Possibly. But I’ll bet you’ll find that rather than being a liar- he’s actually got a wrong view of the world that he believes himself and is totally honest about it.

                    And wildly useless things, are exactly where all the independent adult autistics I know make their living.

          • Mariana Baca

            Then we need to give him supports so he can deal with his environments and finds new ways of communicating. (some medical, some technological, some didactical) Or provide more beneficial environments. A lot of frustration with autism sometimes comes from insisting people need to communicate the “right” way or not feel overwhelmed in an environment that frankly overwhelms many neurotypical adults as well.

            Read what adult autistics have to say about their condition, and ask them what is the language that should be used and what problems need solving.

            • M. Ess

              ‘Fight autism’ is entirely appropriate. I am autistic, and a top-end high-functioning one at that. It is a disorder. Autistics are disordered. We deserve treatment, if not for the differences in how we think, for the processing/perceiving/communicating injuries to our minds and bodies that define ‘autistic’. Someone who is just different is not autistic. I fight autism every single day. Stop making the communication harder by defining away the problem as if they are not integral to the disorder.

          • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

            If it is due to sensory overload and the kid is anything like I was, the real gift would be to NOT go to school with neurotypicals.

        • chezami

          Autism is an affliction of the mind and body. Nobody is saying the autistic are to be punished or killed. I’m simply saying that if we can find a way to treat or prevent the affliction, we should. Come on, I’m on the side of the good guys here. Sheesh.

      • Mariana Baca

        Autism is not a contagion like Polio. It is not simply a PC issue when we live in a society that sympathizes with parents that kill their autistic children.

        • chezami

          Autism is an affliction. Humans should be freed from affliction as much as possible. I am not suggesting killing the afflicted.

          • Jem

            Indeed. ‘Fighting poverty’ doesn’t mean ‘shooting the poor’.

            • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

              Does to those who believe that abortion is the correct response to a single mother being pregnant.

          • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

            And yet, that’s the only way to free the rest of humanity from the affliction autistic people like me represent.

            I say that the human race would be far worse off without autistics.

  • Rosemarie

    +J.M.J+

    I have three kids on the autism spectrum. The first can’t speak at all, so she can’t tell anyone her feelings about it. She was kicked out of religious instruction last year because she kept having meltdowns – and this was a program *for* kids with special needs. She is fifteen and we still have no idea when she will receive First Holy Communion.

    The second is starting to speak a few words but is nowhere near where a ten year old should be. She’s still in the same religious instruction program that her sister was in but we don’t know if/when she will receive First Holy Communion, either. The third is high-functioning, he speaks but still not at appropriate age level. We hope he will receive First Holy Communion next year, which will be two years later than his neurotypical peers.

    Best case scenario for my oldest two, they’ll end up in a home someday. No real prospects for a functional adult life. My son may get a chance at becoming a productive citizen but he’s got a long way to go with a lot of challenges ahead.

    I pray they find a cure for autism, as slim as that chance seems. It has literally ruined the lives of my oldest two. Their condition keeps them from expressing their wants, needs and fears, causing tremendous frustration and other problems I can’t begin to enumerate. I can understand that some high-functioning adults with autism don’t want to change, and that’s fine for them. I would never force them to change if a cure were ever discovered. But some other people are much more debilitated by it, and for them – my kids among them – I hope and pray for a cure.

    • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

      “Best case scenario for my oldest two, they’ll end up in a home someday. No real prospects for a functional adult life.”

      I’ve done a study of adult autistics. Functional level of children, while somewhat of an indicator (after all, 20% of high functioning autistics are independent adults, only 3% of low functioning autistics are) the cure is the same either way.

      Find an obsession. Use the autism to turn that obsession into a hobby. Find a way to monetize the hobby- turn that into a career.

      I’m convinced far too many special needs parents buy into the hype- I know I almost did with my own child (different diagnosis, some of the same symptoms, including now an official IQ score of 68) and stop *searching* for ways that the child can grow up.

      http://aspergerexperts.com/ – these videos will help your youngest son more, but some of the insights can be used with lower functioning children as well.

      And don’t forget, the filmmakers who made Freaks and Geeks, were themselves lower functioning well into their 30s.

      • Rosemarie

        +J.M.J+

        My oldest daughter’s obsession at the moment is tearing holes in her t-shirts and lining up the little pieces of colored fabric she rips off of the shirts. I can’t figure out how to turn that into a hobby that could then become a career.

        Adults with autism who can function in society don’t need to be “cured” Yet I would really like for my daughters to be “cured” at least to the point where they could be productive citizens and achieve their full potential in life, whatever that may be. That doesn’t mean they have to become completely “normal,” whatever that means. I just want something better for them than the future they are facing.

        • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

          I think I’d get her a stick of glue and a large piece of fabric, then show her how to keep the little pieces of colored fabric in line. Might turn into something, might not.

          There is a reason why even knowing that trick, only 3% of lower functioning autistic adults are able to live semi-independent lives; and those that do, usually pay somebody to do the life skills that they never master.

          Independent in this case pretty much means “Paying for my life with my art” vs “Being a ward of the state with a social security trust fund”, and is more about dignity than about actual independence.

          • Rosemarie

            +J.M.J+

            I once tried that when her thing was ripping paper and lining up the strips. Didn’t work. She has her own ideas of what she wants to do.

    • Elaine S.

      “We still have no idea when she will receive First Holy Communion”

      I’m very sorry to hear that; obstacles to their children receiving the sacraments are an additional cross that Catholic parents of autistics bear.

      If you belonged to an Orthodox or Eastern Rite Catholic church which administers Eucharist and Confirmation to infants, that would probably not be a problem… which is one of the things I like about the Eastern tradition. As Eastern theologians see it, insisting that you have to understand the sacraments before you can receive them is like insisting that you have to study nutrition and know what vitamins, minerals, etc. are before you can gain any nourishment from eating. Of course we want people to take the sacraments seriously and appreciate them, but I think we could learn something from the Eastern tradition here.

  • http://outsidetheautisticasylum.blogspot.com/ Theodore Seeber

    I’m doing the Walk for Autism, because recently, Autism Speaks has changed their tune somewhat- they’re even including autistics on their board now.

    But I must warn you about how the “fight against autism” sounds to some of us higher functioning autistics. Perhaps we’re overly sensitive from years of bully-inspired-PTSD, but to many of us who have autism as an integral part of our personality and careers, the unrelenting need of neurotypical society to end anything that is different is very hard to deal with.

    It always reminds me of that sad mother on George Tiller’s website that converted me to pro-life- because she wished she could have aborted her son like she did her daughter. The fact that Autism Speaks used to give money to research pre-natal testing for autism didn’t help any.

  • Elaine S.

    My daughter is autistic — she’s 18 but functions roughly on the level of a second- grader — and I myself am probably at least mildly Asperger’s, though I didn’t realize it until well into adulthood, because I always got straight A’s in school and had a high tested IQ.

    Before I knew what Asperger’s was, I thought of myself as smart but eccentric. After my daughter was diagnosed at age 4, I went through several years of great anger and disappointment at discovering that the “eccentric smart person” part of me I had always been kind of proud of, was really a “disease” and a probable cause of my daughter being handicapped (since ASDs are genetically linked).

    The possibility of having more kids that might be like her was also the main reason that my husband (who may also be mildly Aspie himself, which would explain why we were attracted to one another!) insisted we not have more children — a decision I prayed for years he would change his mind about, but he never did. I think he regrets it now seeing that our daughter will have no siblings and no extended family to care for her as she gets older, but it’s way too late to fix the problem.

    It helped me greatly to discover the websites and blogs of adult autistics and Aspies who explained why they didn’t think of themselves as “damaged goods” and why, in some sense, trying to cure a person of autism is like trying to cure them of being black or being female. The real problem, they say, is that autism often comes with a “package” of other problems such as developmental disability, seizure disorders, OCD, sensory and communication disorders, etc.; these disorders are not themselves autism, but they are what really make life difficult for autistics and those who care for them. Trying to alleviate or work around those problems so that an autistic person can be “the best autistic person he/she can be” is entirely appropriate.

    Their problem was with the people they called “curebies” who insisted upon portraying autism as nothing but a relentless burden that demanded total eradication a la polio or smallpox. That kind of mentality leads to things like a very tragic case in my area of a woman (a doctor with a pathology degree) who was so determined to cure her 3-year-old daughter of autism that she spent thousands of dollars on sending her to special schools, therapists, etc., and she did make progress — but apparently not enough, since her mother ended up smothering her with a plastic bag, in order to “end her suffering”. In a society as anti-life and bent on conformity as ours, a total-cure-at-all-costs approach to autism could lead down a very dark road.

    Our daughter is, fortunately, relatively high functioning — she can talk, read, dress and bathe herself, knows how to swim, can prepare her own simple meals (sandwiches with LOTS of mustard!) and do simple chores. She’s also not as prone to meltdowns as many other autistics. She also received both First Communion and Confirmation on time, though I had to attend all the preparatory classes with her in place of her having an aide. We are still working on getting her to learn how to handle money and perform other tasks that will be essential to her survival when Mom and Dad are gone.

    In some ways, though, I’m glad she’s NOT a typical teen — she couldn’t care less about the toxic swamp we call popular culture, and is content with far fewer material possessions than most young women her age would be. Her favorite pastimes include cutting the hair on Barbie dolls — we buy her dolls at garage sales and thrift stores for this purpose. She also insists on cutting her own hair and actually does a passable job, though I have to clean it up in back and around the edges and a professional stylist could do much better. I know she’d probably love working in a beauty shop, but, she’d have to go through beauty school and get a cosmetology license, plus she’d have to learn to cut hair the way the CUSTOMER wanted it and not her way :-)

    It’s one thing to work on helping autistics communicate their needs appropriately, live independently, or to prevent “stimming” (repetitive actions like flapping hands, rocking back and forth, etc.), seizures and meltdowns from taking over their lives. By all means these things should be encouraged. If that is what curing autism means, I’m all for it. But if “curing autism” means “erasing every trace of social awkwardness or preoccupation with a special interest so that neurotypicals never have to deal with their weirdness,” then I want no part of that.

    • Rosemarie

      +J.M.J+

      When I first started to learn about autism and Aspergers about a decade ago I also came to realize that I have had Aspergers-like traits all my life. As a child I had obsessive interests and difficulties with socialization. So I too may be somewhere on the cusp of the spectrum. But my daughters have it much worse; they can’t talk, my oldest can barely write her name and my other daughter can’t write at all. They can’t learn at the same level as their neurotypical peers and their future looks bleak.

      That’s what I want cured, the developmental delays that are holding them back. If certain elements of autism are not a burden to some high-functioning people on the spectrum then I can see why such people would not want to be fully “cured.” Fine, that’s their lives; they shouldn’t be forced to become “normal,” by whatever definition society applies to that term. Being what some might term “eccentric” isn’t a sin; maybe it makes life more interesting.

      Yet those on the spectrum who are not high-functioning should not be denied the opportunity to become more functional in society. That’s why I don’t like hearing people say “Don’t cure autism.” By that, they might mean, “Don’t try to change me into something I’m not, accept me as I am.” But to my ears it comes across as, “Your children shouldn’t be given a chance for a better life. They should just sit around, mutely ripping stuff up well into their senior years and be fully dependent on other people even long after you’re gone and can’t help them or advocate for them anymore. How dare you try to change them! That just shows how prejudiced you are against ME!”

      So no, I’m not prejudiced against high-functioning people on the autism spectrum. I may even be one myself. I just want my lower-functioning kids to improve their lot in life, to have the same opportunities as their high-functioning counterparts. I don’t want to “cure Einstein;” I want the best for my children. To anyone else I say, live and let live.

      • M. Ess

        >> “If certain elements of autism are not a burden to some high-functioning people on the spectrum then I can see why such people would not want to be fully “cured”… Yet those on the spectrum who are not high-functioning should not be denied the opportunity to become more functional in society. That’s why I don’t like hearing people say “Don’t cure autism.””

        Even as a very high-functioning autistic, I heartily agree. My autism is a brokenness. That does not mean there aren’t advantages in certain narrow areas–I am a genius at studies, great at pattern-solving, etc–but I still would trade all of that to not be isolated from everyone around, to not be fighting tears now at my loneliness and alienation. Cure autism. That doesn’t mean trading away everything that goes with it, but fight and pray to end the crippling aspects of this disorder.

        God have mercy on us in our brokenness.


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