Progress/No Progress

22 Jul

It’s fascinating to me how things seem to go in circles, an idea is challenged, is rejected, you think you’ve moved on and then you find that same idea being used as a strawman argument against you.

In recent days following the massively successful petition regarding the ‘Autism Every Day’ video and the flurry of blog posts regarding the murder of William Lash IV I’ve seen a remarkable return of an idea I thought long dead from the mercury militia – the ‘my problems are worse than yours’ gambit.

Numerous people have tried to insinuate that everyone who has either signed the petition or denounced the murder of William Lash IV are people who’s kids must be ‘high functioning’ and that therefore we cannot have any real understanding of how difficult it is to parent a ‘low functioning’ child.

This is fallacious for numerous reasons. Mostly though its fallacious as its simply untrue. From speaking with a lot of the parents who these people are referring to its clear that they do not have ‘high functioning’ kids. Like my own child, they are considered ‘low functioning’. These are kids who used to smear faeces on walls, run into traffic, have meltdowns at excess noise/smells/tastes/light quality, bang their head against the wall, not communicate, not be toilet trained etc etc. The only difference between ‘them’ and ‘us’ is what we chose to do to move forward. In terms of the challenges, pitfalls, low points and stress we know _exactly_ where ‘they’ are coming from. Parenting a special needs kid is bloody hard work.

The goals for us as parents for _all_ our three kids are as follows: that they are happy, confident and respectful of others. That’s it. If they are happy, confident, respectful of others and rich then that’s great. If they are happy, confident, respectful of others and using a keyboard to communicate then that’s great too.

So how do we do that? I believe that a happy child is a child that is loved unconditionally, that _knows_ it is loved, that _knows_ it is valued exactly as they are. That is engaged first and foremost as a child. I don’t believe you can do that – honestly and totally do that – unless you can genuinely accept that child. That is _not_ to say that some parents don’t love their kids. I believe Erik loves his daughter. I believe JB loves his son. But it seems to me that they see their kids first and foremost as a medical puzzle to solve. No child should be the battleground for their parents hurt and anger.

So – acceptance – that’s the same as doing nothing right? Hardly. Acceptance (to me) means accepting that one’s child has a) a way of perceiving the world that necessitates a parent to alter their teaching and parenting methods and b) that that different perception is equally as valid a state of existence as any other. It seems obvious to me that an inability to see one’s child existence as valid can only result in a child not feeling valued or confident.

Acceptance is just the start. The child still requires teaching and parenting. That means they can be cute, naughty, rude, hilarious, moody, loving and silly. All these states require handling as a parent but for us the approach we take stems from the concept of acceptance.

But I am not suggesting it is not hard work and depressingly difficult sometimes. Of course it is. My objection to the ‘Autism Every Day’ video was not that it showed the bad things. Its that it _only_ showed the bad things and it had to stage manage the situations in order to show those bad things. Nothing good can come from dishonesty.

Sorry but I’ve removed some bits of this post dealing specifically with my daughter. Upon reflection I guess I’m still not comfortable putting out things about her to the whole internet.

106 Responses to “Progress/No Progress”

  1. María Luján July 22, 2006 at 13:01 #

    Hi Kevin
    Glad to hear about Megan´s progress.
    I will send to you an e-mail with some thoughts about your post. Please let me know if you received it in the following hour.
    Thank you
    María Luján

  2. Rose July 22, 2006 at 13:17 #

    Megan’s writing is sooo beautiful! Made me laugh/cry to see it!

  3. Elisabeth Clark July 22, 2006 at 14:30 #

    I suspect that people who WANT to do the whole ‘oh woe is me, my autistic kid ruined my life’ thing will do it, whatever the functioning level.

    I’ve been told I cant possibly understand the first thing about autism, acceptance and all the like because my child isnt ‘low functioning’, but I’ve also been told that I cant understand (etc) because he isnt high functioning either. Rubbish, because he has been both at different points of his life, not that the distinction is meaningful anyway.

    I guess in a way they are right… I DONT understand what it is like to love your child deeply but still see them as a burden or their autism as an appendage to cut off. i dont understand this and I never will, but I know all about faeces smearing and meltdowns and absconding… the only point of difference is the attitude towards it all, as you say Kev, how you choose to move forward

  4. Mike McCarron July 22, 2006 at 14:45 #

    Kevin,

    This is a wonderful article. I agree wholeheartedly with your thoughts. Thank you for posting this

  5. A Lurker July 22, 2006 at 15:03 #

    Kev

    I’ve been a lurker her for awhile. I started on your “Left Brain, Right Brain” site and followed you to “Autism Hub” and read several of the blogs here – I’m especially amazed with Amanda’s sites. And I just wanted to thank you and the others.

    I have no autistic children and I don’t really know any autistic people. I came across your page because we have an 11-year-old autistic neighbor. Whenever I mowed the lawn last summer he would follow me back and forth on the sidewalk. He wasn’t doing anything wrong, it just made me a little uncomfortable and I didn’t know what to expect. So I went on the internet to find out more about autism – and I found your site.

    I have gained a new understanding of autism. I think the acceptance of your daughter is a wonderful and inspiring thing. I totally understand what you mean by accepting your daughter but also teaching and parenting her as well. I it makes so much sense to me to base medical decisions about your child based on the scientific knowledge that is currently available. And I am truly amazed at other parents who don’t get that concept.

    You and your fellow bloggers have expanded my understanding of, not just autism, but all people with ‘disabilities’. Thank you and I wish you all the best.

  6. Joseph July 22, 2006 at 15:42 #

    I’m glad to hear Meg is doing so great. For the record, I’m also the parent of an autistic child who is not “high functioning” is most respects. He’s almost 5, communicates in single words only, and we haven’t been able to make much progress in potty training him so far. Incidentally I decided to start home tutoring my son too. He’s been going to speech therapy, while making progress in areas not related to the therapy. I don’t think he needs “therapy”. He needs to learn, that’s all.

  7. Kristina July 22, 2006 at 16:36 #

    Lovely to hear about Megan—-and I like very much how you talk about your family. We think of ourselves (all 3 of us) very much as a unit—-a team—-altogether in Autismland, “every day.”

    And lovely writing by Megan!

  8. Do'C July 22, 2006 at 17:04 #

    “I don’t believe that children can develop in a healthy way unless they feel that they have value apart from anything they own or any skill that they learn. They need to feel they enhance the life of someone else, that they are needed. Who, better than parents, can let them know that?”

    Fred Rogers 1928-2003

  9. Tera July 22, 2006 at 17:08 #

    Amen!

    Lovely post, Kev…and lovely writing by Megan. (I especially love the “M.” It’s not like any other M I’ve ever seen…it’s really hard to stop admiring it 😉

    Tera

  10. mcguffin July 22, 2006 at 19:12 #

    Kev: Thanks for showing us the pic of Megan’s writing of her name — very touching!

  11. A.N. OtherLurker July 22, 2006 at 20:00 #

    Another lurker here! I so agree with this. My son is 6 and non-verbal, he attends special school. He is absolutely georgous, very hard work at times but nonetheless a delight to be around. I know I’m his parent so biased but all his school teachers love him too! He’s very smiley, giggles and loves to play and be cuddled…I could go on about how wonderful he is but I won’t bore you all! He is secure, he must know his parents and family love him and accept him exactly as he is.

    Although he doesn’t speak, he’s fully toilet trained, loves the computer and his gameboy. He can recognize some written words and can write his name over the top of an adults writing. He loves long walks, fresh air, strong winds and torrential rain, the outdoors in general, particularly the sea and the beach.

    There are lots of things we can’t do as a family at the moment but we have seen so much improvement over just the last year (with no other interventions only his schooling and our constant love and efforts to help him achieve as much independence as he can) that I haven’t given up hope of seeing further improvements.

    I can’t pretend it’s never stressful but for the most part, like you, we live a happy family life – it’s just different to the norm.

  12. Ms Clark July 22, 2006 at 20:32 #

    I also laughed out loud and cried at seeing megan’s beautiful writing of her name. What a girl! What a fabulous child.

    My own adult ASD offspring doesn’t fit “high” or “low.” Once I used “middle” and thought I was breaking some rules, but I guess some clinicians actually use, “middle functioning.” But none of them “fit.” We’ve discussed this many times, you can’t tell anything by a label like “high functioning” or “low functioning.”

    Another aspect of “acceptance” is accepting that you don’t get to have a “normal” life once you have a child of any kind, perhaps one’s choices are more limited with a special needs child. I think that’s part of the rage of the *I SHALL CURE* parents. They feel that their child reflects badly on them or spoils the otherwise perfect family picture. Ever notice how it’s almost always white, middle or upper class (entitled) families that have the most rage about having a handicapped kid? They want to be on the “A” list of ultra cool families where all the kids are in soccer and are beauty queens getting perfect marks in their private schools. They might be able to accept their child’s disability if this culture didn’t mark the *entire family*, parents especially, as freaky once they have a handicapped kid. It doesn’t have to be that way, not all individuals think like that, but having a disabled child makes you inferior to this eugenically inclined society. Apparently it’s a little better among American Hispanics and Blacks. How is Brad supposed to cope with the *S-H-A-M-E* ? He can’t. (Say the Serenity Prayer Brad, dear, and listen when God tells you that you can’t change or exchange your child at will.)

    There are so many things that I can not or will not do because I have responsibilties to my ASD adult child. My NT kid gave up a lot because of having a special needs sibling and a single mom but for some reason that one turned into a spectacular NT adult who actually loves me and the ASD sibling.

    There’s almost always something else interesting a person can do if one thing is out of the question.

    I got a book from the public library called, “Sensational Kids.” I haven’t read it yet, but its about kids with sensory processing difficulties. Autism is not the main thrust of the book. Anyway, what nerve this person has calling these defective children, “sensational.” You’d think she’s a ND freako or something. Sounds suspiciously like neurodiversity and “acceptance therapy.” Why do I think she *doesn’t have* bile spewing (Lenny), enraged (Sue M), lawyer toting (Brad) zealots (JBJr) screaming (srinath) at her for saying nice things about handicapped kids.

  13. laurentius-rex July 23, 2006 at 11:55 #

    Unfortunately I have seen this petition provoke an unexpected backlash from those who would normally appear to have a restrained and reasonable attitude toward autism, that has isolated us in the advocacy community, because they have not seen behind the video to the philosophy that created it and can see nothing wrong with most of the video itself, which means that those of us who support the petition are seen as over the top fanatics.

    Unfortunately I seem to be seeing more divisions in the online autistic community lately around the “my autism is worse than yours” issue in that the standard defence to any radical social model (or post social model which is more complicated still) theorising is that anyone who maintains that the disability is not inherent within them but a product of ones interactions with society cannot be ipso facto as “disabled” as the complainant who fails to see the argument.

    The whole pity party culture runs very deep and turns up where you would least expect it.

    Well whatever I wonder if it is ever safe to put ones head above the metaphorical parapet to be attacked on all sides.

  14. Ballastexistenz July 23, 2006 at 14:34 #

    I haven’t seen the backlash Laurentius is talking about, but I haven’t been reading a lot of my email lately so I’m sure I’ve just managed to miss it.

    But I’ve definitely seen the whole pity-party attitude cutting across all official and unofficial diagnostic boundaries. And, yes, it is generally used the most vociferously against those of us who view things in a political light instead of in a very individual or medical light. We must not have experienced the full horrors of what it means to be in (insert category here) or else we would not hold the opinions we hold… and so forth. Definitely I have even seen self-identified “aspies” pull that one.

  15. Kev July 23, 2006 at 18:27 #

    I’ve not seen a backlash either but that’s cool – if people don’t agree, they don’t have to sign. Worrying but ultimately that’s their choice.

  16. Kev July 23, 2006 at 19:20 #

    By the way – great to hear everyone else’s stories too :o)

  17. laurentius July 23, 2006 at 20:51 #

    It is unlikely you would have seen the backlash on the UK parent lists and especially not on the closed NAS Councillors list.

    What really surprised me though was the way that some autistic people seemed to support the portrayals in the video as representing some peoples lives.

    The real insidios thing is the way that some parents want this sort of shock message to go out as they believe that is the only way to get people to listen and for there lives to be improved so they welcome anything, never mind the underlying messages of autism speaks wrapped up in it.

    It certainly brought some people out of the “woodwork” though and now I know which side they are on.

    Another thing people did not like was the radicalism of the petition which they considered to be over the top and exageration based on what “they” saw in the video.

    Perhaps we can lern from our enemies though, in that the medium once again scored over the message. We need to be careful not to ensure our message is rejected because the medium it is wrapped in is too strong for the audience, unnacustomed to that viewpoint.

    Not that I am particularly known for subtlety myself.

  18. Ms Clark July 24, 2006 at 01:10 #

    Larry wrote: “Not that I am particularly known for subtlety myself.”

    🙂 Me, too, neither.

    It’s too bad your NAS parents didn’t catch that the video has a subtle message that mercury made those kids that way, that they need tons of expensive “dietary supplements” to cure them, and besides that, if the parents with all the money to have all that “therapeutic” junk in their homes can’t cure their kid, what “hope” does a poor parent have? How’d you like to be a poor parent and think, well, my kid has no chance, obviously because these people with all the access in the world to cures and therapies are angry because they are stuck with kids they can’t cure or can’t cure fast enough, and wan’t them dead, at least some of the time, because of it.

    Man. I never lived in a place where I could devote a separate room to “therapy.” I bought very few, high quality educational toys and games, because I could only afford them rarely. Did you see that psychotic collection of stuff in that one woman’s house, the one with the pathetic hole in the celing? Sick people. Sick and “desperate”. Not good models for young parents of newly dx’d kids, especially not poor ones. They’d be left with guilt and no hope. How’s that for a recipe for disaster?

  19. Nathzn July 24, 2006 at 01:34 #

    I’ve not seen a backlash either but that’s cool – if people don’t agree, they don’t have to sign. Worrying but ultimately that’s their choice.

    Kev, I mentioned something like that on another comment section, but that was just the fact that acediemics were noticing it.

  20. Sharon July 24, 2006 at 17:31 #

    I’ve seen the backlash Larry refers to. I think I stirred it up too much on one of the UK lists. I was very surprised though at the level of acrimony raised by my critical analysis of the Autism Speaks film, versus their views of it as a representation of the true horror of life with a autistic child. It was a list where I thought there was a lot more support for the autism advocacy view-point.

    I’m a bit pissed off about the whole thing to be honest. At 1st I was thinking that their experiences must be much worse than mine and their children, more difficult to raise. Now I think about it some more, I realise I have just as much to whine about if I chose to do so.

  21. GMAC July 24, 2006 at 23:53 #

    Kev-
    I always love to hear of Meg’s progress, and seeing her name written by her was oh-so-sweet! I love seeing how kids progress, at their own pace and in their own time. She’s doing wonderfully and your parental/paternal pride shows.
    We, too, as a familial unit embrace our autistic child’s differences. Oh he used to be a poop-smearer, and I thought those days and nights would never end. They did. With no intervention from us other than our repeated oh-this-is-just-too-gross-for-words expressions and repetition (seemingly endless) of “poop goes in the potty, not on the walls.”
    He is a true delight to all who meet him and take some time to know him. We have no desire to turn him into an NT; the world has enough people who think inside the box. Variety is why we are all here.
    For me, reading the words of and communicating with autisitic individuals is what really turned me from the “curebie” mentality. I realized he didn’t need fixing; that he was his own person and it was not my right to change or “fix” him. The easiest and plainest way to put it, for me, is that I would resent someone else trying to change my thought processes and communication methods. It would be painful for everyone involved. As I’ve said so many times, this does not involve sitting around and watching an autistic child languish with no intervention, instruction or guidance. It just means adapting timetables, expectations, and methods of parenting. The “oh poor me! I have an autistic child to raise!” mentality is wearing a little thin with some of us out here. I’ve been in the trenches as a parent for far too long, and in some pretty crummy circumstances from time to time, to buy this self-pity BS.
    Parenting is always filled with sacrifice, worry, sleep-deprivation, and anxiety over a child’s future. Yes, a special needs child will need more and take more, but they give more in return. Every tiny accomplishment is a big deal and we have all become better parents and people in the long run.
    Please continue to share Megan’s progress with all of us. For some, it is a light at the end of the tunnel. For others, it is confirmation of what we suspected all along. We have fabulous kids and we are lucky to have them.

  22. Do'C July 25, 2006 at 05:43 #

    Extremely well put GMAC.
    😉

  23. mumkeepingsane July 25, 2006 at 13:42 #

    Your last few paragraphs made me smile.:) Your daughter sounds like a gem.

    The thing is, many parents play this “my life is harder than yours” game. It happens all the time in NT circles. It’s some sort of martyr syndrome and obviously there are just as many of those type of parents who are parenting children on the spectrum. It’s a oneupmanship contest that often goes “Oh, you think that’s bad, wait till you hear what my Johnny is doing to me….” I personally can’t stand it when that’s all that ever comes out of a person’s mouth although I recognize we all probably do it to a lesser extent.

  24. Ballastexistenz July 25, 2006 at 14:15 #

    Lots of autistic people play that game too.

    That’s where you get the “I have the lowest functioning case of Asperger’s in the entire known universe and of course that’s why I want a cure, the rest of you can’t possibly understand what I go through” types.

  25. Gabesmom July 25, 2006 at 17:32 #

    Funny, but the whole oneupmanship game is also constantly being played in the opposite way. “My kid is more intelligent, more athletic, more talented than your kid.” I suppose if you feel you can’t compete in that way, you turn to the “my child smears more feces than your child” game. I refuse to play that game, and I think this is one of the many reasons I’m considered strange. GMAC had it right when she said “We have no desire to turn him into an NT; the world has enough people who think inside the box. Variety is why we are all here.” Unfortunately, those who think this way are still very often accused of “doing nothing” for their kids.
    I guess we’re just not competitive enough, and we’re entirely too patient.

    Ballastexistnz, I wonder if some of the autistic people who play this game are only doing so because they learned it from their parents or society in general. Kids are really quick to catch on and exploit the whole “victim mentality”. If we had a more positive outlook on autism specifically or differences in general, I wonder how much happier everyone would be in the long run.

  26. Ms Clark July 25, 2006 at 21:28 #

    There’s another funny thing, if someone “tops” you, or “bottoms” you in the “I have it tougher,” game then you might feel like you don’t have it hard at all and have no reason think that something is really a struggle. The martyrdom game, though, it’s icky and manipulative. The people who play it are not willing to really help or support someone else through their problems. I can’t see Alison Tepper Singer saying, “Look, when you kid has a meltdown and you need to talk about how hard it is for you, just call me up and I’ll listen without playing, ‘can you top this?'”

    My friend Jimmy had an “bathroom” accident in my car. We hadn’t planned his bathroom access the right way and he leaked urine on my car seat. He was a 30 year old man. There was lots of urine. So what? Poor guy, he must have been miserable. Jimmy had Fragile X and was considered profoundly retarded, I suppose. I loved him and he loved me. He told me he would marry me in thirty years. He died more than a year ago. His death was a tragedy, his mother is still so sad that he died.

    Sorry, not trying to play, “can you top this?” for sad stories, but the feces smearing whining stuff gets old. Moms and dads have a different relationship to their own kid’s poop than strangers have with it anyway. Parents are supposed to get a little desensitized to their own kids poop because they change their own kids diapers.

    I appreciate what GMAC and gabesmom wrote, very nice.

  27. anonimouse July 25, 2006 at 23:26 #

    I think the short summary to all of this is “suck it up and deal with it” and/or “life is hard, get over it.”

    Not to minimize anyone’s personal challenges, mind you…

  28. David N. Andrews BA-status, PgCertSpEd (pending) July 26, 2006 at 01:01 #

    MsC: “My friend Jimmy had an “bathroom” accident in my car. We hadn’t planned his bathroom access the right way and he leaked urine on my car seat. He was a 30 year old man. There was lots of urine. So what? Poor guy, he must have been miserable. Jimmy had Fragile X and was considered profoundly retarded, I suppose. I loved him and he loved me. He told me he would marry me in thirty years. He died more than a year ago. His death was a tragedy, his mother is still so sad that he died.”

    I have to tell you that I am still saddened by this loss you went through. It saddens me also that he would have had to feel so bad about his “bathroom accident” (having no doubt from many quarters been reinforced to this sort of state about it), and your own attitude of “so what” to the urine… saintly, if I may say so. I’m like this when my daughter visits. She also has occasional bathroom accidents… we get by. There is no fuss. At 7 or at 27, such things are, despite the cultural constructs about them, just accidents of bladder/bowel control.

    I actually had to try to get this notion through to one of the most stupid spec-ed-oriented preschool/nursery teachers I have ever met or am likely to meet in my frigging life.

    At the time of the social services meeting, Tuula was about 5. She could speak, if she so felt the desire to. She would interact on the same basis. She had, by then, taught herself how to use a computer, and then how to use the computer to get onto the internet, and then how you use internet sources to learn English.

    And this bleeing idiot spec-ed nursery teacher was getting all fucked up because Tuula still had a nappy on at nursery. Evidently, Finnish education programmes have very little in the way of developmental psychology and child development in them: in teh UK, nobody would bat an eye-lid for fear of looking a total pillock. but this one idiot was complaining.

    I told the bitch off, good and proper. In that meeting, I (as BA-status, PgCertSpEd – pending) was the most highly qualified person to talk about *anything* to do with child development issues. And I bloody-well let the fuckers know.

    MsC, you love that man for who he was, as he was, and without conditions attached. That is the kind of love that *all* autistics need. It’s the kind of love that all humans need! You have a BA in psychology, so you know about Rogers… and unconditional positive regard. You show it to me (you aren’t keen on how I say things, but you still see me as your friend… as you have said elsewhere on this blog)… and you definitely show it still to the man you love, even this long after his passing.

    I am sorry that you didn’t get to marry him, but what gives me hope in this world in which the likes of John the Psycho-Bastard feel they can reign supreme is that people on the spectrum can so unconditionally love others on the spectrum. Sod it… maybe that some one person can so unconditionally love another person, whoever or whatever they are. Rogers is most likely smiling because of you.

    You were lucky to have had that man’s love. But he was also very fortunate in having you love him too. And the fact that he knew the love of a woman until he died… well, who can evaluate that experience? I’m a psychologist and I can’t. Maybe only Jimmy can, where-ever his essence resides. I suspect that his essence resides within all who knew him and even in those of us who got to know about him through our knowing you.

    Martyrdom sucks. Your story there, even with its details and implications for all concerned, is not martyrdom stuff… it’s just real life, and that’s how people accept it (if their brains work right!). And you live real life and tell it. You let your studies inform it, and you tell it.

    That is one of the things I respect you so very much for.

    Some folks don’t even deserve to ask me for my respect. Such unconditional love as yours for Jimmy… now *that* gets my respect. In plenty.

  29. Gabesmom July 27, 2006 at 05:52 #

    Ms. Clark said, “Sorry, not trying to play, “can you top this?” for sad stories, but the feces smearing whining stuff gets old.” It really does get old after a while. I consider myself to be a very sympathetic person, and I certainly understand that everyone has different ways of dealing with disappointment, fear, uncertainty, etc., but at some point parents have to stop complaining and begrudging their fate and start looking at what is in their child’s best interest. (As my MIL put it, once you have kids, you are no longer the number one priority in your life) Parents teach their children by their words and by their actions how to live. It would not surprise me at all to learn that the adult autistics that Ballasexistence was referring to had parents who also played up the role of the victim. I’m as guilty as the next person of losing my temper, becoming frustrated and tired, but I get over it. It’s not that I don’t think parents deserve to have the occasional meltdown, it’s just that there is a huge difference between allowing oneself to lose it on occasion, and living one’s entire life as if it was some kind of a Greek tragedy. (I apologize to anyone out there who’s life really is a Greek tragedy. You have my greatest sympathy 🙂 )

  30. Ruth July 27, 2006 at 14:46 #

    AD-

    Love—is anterior to Life—
    Posterior—to Death—
    Initial of Creation, and
    The Exponent of Earth—

    Emily Dickinson

    Love is what keeps me going as a parent, when it would be so much easier to give up. My daughter has made great progress, but 5 years ago , yes there was brown stuff on my walls. I just considered it performance art. On our summer vacation, she greeted family, had conversations with them and behaved reasonably. All with just education, love and a relaxed sense of household neatness.

  31. Bonnie Ventura July 27, 2006 at 17:48 #

    Many of the behaviors that the “oh poor me” parents often complain about are not unique to autistic children and would not have been considered abnormal childhood behavior a few decades ago, before childhood became so medicalized.

    My autistic son never had tantrums or played with icky stuff, although he did get great enjoyment from ripping off wallpaper and tearing up miniblinds. His non-autistic sister ate bugs, stuck boogers on the wall, and had horrid tantrums when she was small. It’s in the nature of young children to do various things that annoy their parents, and I think we do our kids a grave disservice when we treat common childhood behaviors as “symptoms.”

    I very much agree with the recommendation of “education, love and a relaxed sense of household neatness.”

    Here’s a link to a humor piece I read recently on treating childhood as an illness:

    http://www.pshrink.com/humor/Childhood.html

  32. Kathy N July 27, 2006 at 20:51 #

    Wow. I can’t believe I’m about to say this because I am quite sure that I will be reviled and hated for it. Oh, but first, before you hate me, I have to say that Megan’s handwritten name DOES look beautiful, and it sounds like she lives in a lovely environment with all sorts of support and love–which are exactly what EVERY kid needs to thrive. Okay…now for the “you’re gonna hate me” part: my son (2 1/2 yo; super sweetie-pie; yes, did smear feces quite a few times but thankfully seems to have passed that phase now; giggly; mischievous; sparkly-eyed; still smells good to me even when he’s been sweating from running around outside; animal-lover; tickle fiend; awsome hugger and kisser; drives me slightly batty when he bolts away as I try to capture him to dress him (or change his diaper); book, number, letter, bug, bubble lover; wouldn’t trade him for any other child in the whole world) was slowly becoming more and more autistic very early this year. He was starting to do lots of “stimming” type activities (he bounced like crazy–wore out two crib mattresses), OC stuff (I must have picked up the videos that he repetitively placed one after another on the ottoman about a jillion times, and (the thing that hurt) he started avoiding eye contact. I read some books, did some research, and had him tested for IgG reactions to gluten and casein (which he definitely had). We put him on the GFCF diet in March and within a week, I suddenly realized that I hadn’t picked up the videos in a few days. His eye contact started getting better again and he stopped constantly lining up things–shoes, videos, cards, etc. Since that time, I started reading more about other parents who put their kids on the diet with much success, and about how their kids also seemed to do better with supplements (calcium, Vitamin C, etc.). We did some additional testing and started doing some supplements. We found out my son had intolerances to lots of foods and so we did our best to eliminate those foods from his diet (rice—he’s intolerant to rice! ack!). Two days after we got rid of rice in his diet, he had his first ever formed bowel movement–the first in his life! at 2 1/4 years old! I had been VERY skeptical at first about trying any “biomedical” treatments for my son. But now I find myself wondering that if the “biomed” folks were right about the diet working (my son has made HUGE gains and he’s so much happier–he’s a little giggle-box), might they also be right about other things? Such as (oh no…I’m going to utter the words) mercury poisoning potentially being a problem. And I have to say that I’m beginning to be a believer. I’m going to take my son to a DAN! doctor (I know I know…might as well take him to hades, eh?) next month and see what she thinks.

    Here’s the deal though…I’ve been listening to the “biomed” folks lately and some of them seem really frustrated when other parents of autistic kids won’t try the biomed approach. Some are even a bit aggressive about it, which is ridiculous, though they are very well-meaning. In reading your blog, and that of a couple other anti-biomed parents (sorry if that’s not a good term to use–just trying to be descriptive), some of them seem to be very frustrated when other parents of autistic kids won’t eschew the biomed approach. Some are even a bit aggressive about it, which is ridiculous, though they are very well-meaning.

    I hope you see where I’m going here. I’m not exactly an on-the-fence person right now. I’m leaning toward the biomed point of view because I’ve seen really good results just from dietary measures. The thing is, though, that I (and I presume most of the “biomed” parents as well) truly believe that my child is biologically ill. I don’t think he is mentally, neurologically, or otherwise ill, just biologically ill (with neurological after-effects). I will love my son fantastically, fanatically, whole-heartedly, etc. until the day I die (and even thereafter, I believe), but if he’s physically sick (as I believe he is), of COURSE I want him well. I understand the point being made about how selfiish it is when people are upset that they can’t have a “showcase” kid. I understand (though I don’t care) if you think I’m misguided in terms of believing that my son is physically ill. I understand (though I don’t care) if you think I’m being hoodwinked by people out there trying to make a buck off of “autism treatments.” What I don’t understand (and do care about) is the bitterness that I hear from both sides (though I think I’ve seen more recently from the anti-biomed folks than the biomed folks) about what other parents are, or aren’t, doing. I think (hope) that we all feel like we are doing what’s best for our child(ren). I know that’s what I’m trying to do for my son. I really did feel like I was losing him, and now I feel like he’s coming back to me. You can call me a sap or whatever you want, but I know my son is feeling better, doing better, and he’s happier. That’s what really matters.

    I think we should all be a lot more supportive of each other, no matter the ways in which we work with our children (well, with the exception of abuse, and I don’t think it’s abuse to, for instance, try to get my son’s copper level in the normal range when it’s so far off the chart the line won’t go that far). Keep up the fantastic work with your daughter! I plan to do the same for my son.

    Kind Regards,

    Kathy

  33. mcguffin July 28, 2006 at 00:42 #

    Somewhere along the way the term biomed (where if you look up the meaning of “Biomedical” is strictly MEDICAL) became synonymous in the ASD community with CHELATION. As someone who has, in fact, used MEDICAL treatments on my child … per my child’s specific medical issues, I have found this blurring by the chelationists of what is Biomed extraordinarily frustrating. Chelation, unless performed in a Children’s Hosp for acute metal poisoning, is NOT biomedical; at best it’s ALT-MED — at worst … the lowest form of quackdom.

    I have followed the research into immune-mediated aspects avidly — since the latter part of the 90s. Well, actually, since the 70s when I was dx’d with an immune illness. The Hopkins study (by way of example) was very intriguing, but inconclusive. It cannot yet be ruled-out that there is not some sort of dysmaturation within the immune systems in some ASDs, however from all significant parties the metals hypothesis has been ruled out and pursuing that line of research I consider detrimental to the furtherance of real and valid academic research into ASDs.

  34. Ruth July 28, 2006 at 01:02 #

    I know several non-autistics who are gluten-sensitive, and lots of people who cannot tolerate dairy. Following a dairy-gluten free diet makes medical sense for some kids. If kids have food issues and won’t eat a balanced diet, supplements are a good idea. What most of us here object to is DAN docs who recommend vitamin A high enough to cause liver damage, or Secretin, or chelation, which have no medical indication for autism.

    I think weight loss is a good analogy. Good diet programs give you info on nutrition, behavior modification and exercise. Quacks tell you their pills will melt away the pounds without effort on your part. There is no magic pill to cure autism, but get medical care so your kid is a healthy, happy autistic.

  35. Jennifer July 28, 2006 at 03:41 #

    Kathy,

    Allergies to wheat and milk are very common, even with NT kids. More common than autism by far. It is perfectly possible that your son has an allergy to those foods, or is lactose intolerant. I am quite sure that an autistic kid in pain or discomfort is going to act more “autistic” than if he had no discomfort.

    You can have these things checked out by a mainstream doctor. Lactose intolerance is diagnosed with a breath test, as far as I understand.

    It is a good idea to have a complete medical work up on your child if you find that he is much happier on a special diet.

  36. Brad July 28, 2006 at 06:14 #

    Kathy wrote:

    “I really did feel like I was losing him, and now I feel like he’s coming back to me. You can call me a sap or whatever you want, but I know my son is feeling better, doing better, and he’s happier. That’s what really matters.”

    Kathy:

    God Bless you!! You see guys, I get these kinds of notes, dozens a day, and these people are not crazy (and to be very clear, I do not know Kathy nor did I ask her to post here!!) They are well-meaning parents, who love their children intensely, who realize they are sick and just want them to get better.

    While I’m certainly guilty of being annoyed with you guys, I think Kathy can appreciate why.

    Brad

  37. Gabesmom July 28, 2006 at 07:25 #

    Brad, I hope you’re not inferring that all autistic children are sick, because I have to tell you that if my son is physically ill, I must be somewhere near death. He is energetic, strong, and almost always happy. If that kid is sick, I want to have whatever he’s got.

  38. anonimouse July 28, 2006 at 15:07 #

    Kathy,

    If I were in the position where I thought my child might be suffering heavy metal poisoning (irregardless of whether the child was exhibiting signs of autism) I would take him or her to the pediatrician and ask the doctor to order the appropriate tests. Any decent hospital or health system can run these tests.

  39. Toad July 28, 2006 at 16:28 #

    – While I’m certainly guilty of being annoyed with you guys, I think Kathy can appreciate why.

    Can she appreciate why many would be annoyed with Generation Rescue?
    The quotations that follow appeared in the commentary of another blog.

    “…I don’t think you bunch of child abusers deserve any respect….”
    Posted by: John Best | May 14, 2006 12:28 PM

    “…Long live Generation Rescue and it’s Rescue Angels and JB Handley. He’s a god!!!!…”
    Posted by: margaret | May 14, 2006 08:14 PM

    “…I think you should hang yourself, you’d be better off…”
    Posted by: John Best | May 16, 2006 09:39 AM

    “…If things don’t improve your way soon, you should take John’s advice and off yourself….”
    Posted by: margaret | May 16, 2006 01:16 PM

  40. David N. Andrews BA-status, PgCertSpEd (pending) July 28, 2006 at 20:09 #

    anonimouse: “Any decent hospital or health system can run these tests.”

    But Kathy’s told us she’s going down the road of the “autism biomeds”… not mainstream biomeds…. different thing entirely.

  41. anonimouse July 28, 2006 at 20:30 #

    David,

    But Kathy’s told us she’s going down the road of the “autism biomeds”… not mainstream biomeds…. different thing entirely.

    My point exactly. If you believe your child might be suffering some kind of heavy metal poisoning, the logical thing to do woudl be to take that child to their regular doctor to verify the diagnosis. At least then if you want to pursue an “autism biomed” treatment protocol with regards to mercury you know there’s a valid reason to do so.

  42. Joseph July 28, 2006 at 21:00 #

    At least Kathy did some medical tests and acted appropriately based on that information. While there might be something to Kathy’s story, it’s hard to not be skeptical of such, based on the history of autism treatments. See my take on it.

  43. David N. Andrews BA-status, PgCertSpEd (pending) July 28, 2006 at 21:09 #

    anonimous… indeed … we think alike on this.

    Problem is… I don’t think Kathy’s thinking particularly the same way… her post seemed to be more of a “I’m going biomed… bugger yous!” sort of thing…

  44. Joseph July 28, 2006 at 21:31 #

    well, with the exception of abuse, and I don’t think it’s abuse to, for instance, try to get my son’s copper level in the normal range when it’s so far off the chart the line won’t go that far

    I’d check for Wilson’s disease, just in case.

  45. Kathy N July 29, 2006 at 00:56 #

    Thanks for your last post, Joseph. My heart certainly raced when I did some quick Googling and read about the potentially fatal effects of Wilson’s. I’ll definitely follow up on it, but I have to mention that I do find it interesting that if my son DID turn out to have Wilson’s disease, the treatment would most likely be 1) supplementation with zinc (which we’ve just begun ramping up on because other “biomed” parents suggested using zinc to lower my son’s copper level) and 2) irony of ironies–chelation.

    I also wanted to mention that my son’s regular pediatrician (a wonderful woman, a fairly conservative clinician (MD, of course), and a well-respected physician in our area) knows we’re doing the GFCF diet, knows we’re giving various supplements (in fact, she graciously prescribed Nystatin for my son on my request though I know she has doubts about the biomed approach), and knows that I’m doing all sorts of research and am being extremely cautious as regards all biomed treatments. Her comment when last we visited her office (a couple of weeks ago) was “Whatever you’re doing, keep doing it. He’s doing great.”

    There are two reasons I’m going to a DAN! doctor rather than trying to accomplish everything through our regular pediatrician. The first reason I’ve already mentioned: she has doubts about the biomed path. She was willing to prescribe Nystatin but I think she would want us to see a specialist to deal with things like potential heavy metal issues. The second reason is just that; she doesn’t specialize in ASDs. In other words, as much as I like and respect my son’s doctor, there is no way that she, or any physician for that matter, can know everything about everything. That’s why there are specialists, and that’s why I’m going to see a specialist. The DAN! doctor I’m going to see not only has done (and is still doing) research on biomed treatments, she also has a daughter who was diagnosed as autistic and whom she has helped to recover. Oh, and contrary to what someone posted earlier, speaking for myself, at least, I definitely don’t view chelation as the end-all be-all biomed treatment. Just as every autistic person presents differently in terms of symptoms and behaviors, there are many different treatment methods that can be used (ie.g, HBOT, GFCF diet, supplements, etc.). Some treatments work for some, other treatments work for others. I think the key is discovering what works for each unique child.

    By the way, my initial research led me to the work done by Dr. Robert Cade, who is at the University of Florida and who is probably best known for inventing Gatorade. I live near UF, so I contacted Dr. Cade’s office (I got the number of his PA from my son’s pediatrician) and that is how I found out about testing for anti-gliaden and anti-casein antibodies (which we did–and we later did further IgG testing as I mentioned before). David had posted earlier saying:

    “Also, while Kathy is reporting improvements in her son’s condition, without a thorough controlled study of any of the treatments she is using, it is impossible to know if any of them is actually doing anything… let alone which one.”

    Dr. Cade’s research did exactly that—I think he had 70+ autistic subjects in his study and he required that they do the GFCF diet for one year without any other interventions. The results were remarkable. I wish I had the study in front of me right now, but as I recall, over 80% (I think it was closer to 85%) of the test subjects showed drastic improvements with the diet, some ceasing to exhibit all autistic symptoms. We could have chosen to participate in Dr.Cade’s continued study, but I didn’t feel right doing that because I knew that we (as most parents who start heading down the biomed path) wouldn’t want to risk not doing anything but the diet for at least a year’s time. The one (and only) thing that I’ve found that everyone agrees on is that early intervention is key. (Well, I’m guessing that those following this blog agree with that, but maybe that’s presumptive on my part–sorry if that’s so). Anyway, I didn’t want to limit the steps we might take to just the diet, so we didn’t attempt to be part of Dr. Cade’s research. I’m grateful to the other parents who DID participate, and perhaps you will view me as a weaker person for making that decision, but what I’ve said to my husband and others is that no matter what, I don’t want to look back in ten years and have any regrets. No matter what happens with my son, I want to know that if he needed something (other than unconditional love, which we will always give him) we did our best to provide it for him.

    Sheesh…I’m a long-winded person, aren’t I? 🙂 Sorry for the lengthy exposition, but I’m just as passionate about my love for my son (and the measures I’ll go to help him) as you are in your love for your child(ren).

    Okay…now it’s time to try and break apart and tear down all I’ve written…so go for it. 🙂

    Kathy

  46. Kathy N July 29, 2006 at 01:13 #

    I just did a quick search and found one of the reports showing the results of Dr. Cade’s research. http://www.lightlink.com/lark/opioid

    There are better documents than this, but it’s what I could find with a squiggly boy (my 8-month old) in my arms).

    Kathy

  47. clone3g July 29, 2006 at 01:44 #

    Did Dr. Cade test your son?

  48. kimmah July 29, 2006 at 04:40 #

    I have a “high functioning” Aspie son and he:

    1. smears feces on the wall–as well as toothpaste, liquid soap and chewing gum

    2. has meltdowns and tantrums that defy description over seemingly mundane issues

    3. makes ear-piercing sound effects as we go along in public places

    4. refuses to eat a variety of foods for one reason or another depending on their texture, color, classification, etc.

    5. won’t turn upside down, swing or do anything that involves losing “control”….

    etc.
    does that make my life somehow more difficult than anyone else’s with an austic child? No. Is it a contest? No. I’m so tired of being treated as there is some sort of threshold or something that sets the bar for who is allowed to have an opinion on austim and who is not.

    The debate is just another smokescreen. Bah.

  49. Kathy N July 29, 2006 at 05:19 #

    No, they don’t do the gluten and casein screen at Dr. Cade’s office. Instead, Dr. Cade’s PA, Malcolm Privette, advised me to get my son’s pediatrician to refer him for a gluten and casein screen from Allatess Lab in Massachusetts, which we did. The lab sent my son’s ped the results, which they then forwarded to us. I spoke with Mr. Privette once I had the results in hand. I don’t have them in front of me at the moment, but the score for casein was in the high 1300s and the score for gluten was somewhere in the 1800s (I can locate them if anybody is THAT interested in the specifics). Mr. Privette told me that the normal range for those scores is 0-100. We considered joining the ongoing study that Dr. Cade had, in which case we would have submitted urine every three months or so for free urinary peptide analysis. As I mentioned, we decided against doing this because I didn’t want to throw off Dr. Cade’s results (though the free testing would have been nice). Even that early on I was already starting to think that we might try additional methods/treatments.

    We didn’t start doing any supplements other than just a regular multi-vitamin (I think it was Flintstones) until almost 2 months into the diet. As I said earlier, it only took a week of the diet to convince us that we should keep going with it. The OC stuff dropped to almost nil within the first couple of weeks, but the sensory stuff has been slower going (though it’s getting there). The diet was SO difficult at first, but now at almost 5 months in, it’s almost second nature to us (plus we’ve been able to find a lot of good GFCF substitutes for things my son likes to eat). A side benefit of the diet is that my son is now expanding the selection of foods he’ll eat. I’m still amazed when he eats broccoli (or trees, as we call them) though he only eats the tip top of the florette and piles the rest on a separate part of his plate).

    G’night all (or at least it’s night here)…

    Kathy

  50. Kev July 29, 2006 at 07:39 #

    First off Kathy, let me say ‘sorry’ for taking so long to answer your comment. Life’s been a bit hectic and I’ve not had much web time this week.

    _”Megan’s handwritten name DOES look beautiful”_

    Thank you :o)

    _”I had been VERY skeptical at first about trying any “biomedical” treatments for my son. But now I find myself wondering that if the “biomed” folks were right about the diet working”_

    I think we need to clarify the meanings of a few things and their nature. Personally, I have no issue with a GFCF diet (or any diet). We tried it too. Didn’t do any good, but we tried it. There’s good reason to suspect something like this might have an impact. I know for example if I eat to many carby things I feel crappy. Meg has Asparthame excluded from her diet.

    If going down a particular dietry route has increased your child’s health then I can’t imagine anyone having any issue with that.

    _”And I have to say that I’m beginning to be a believer. I’m going to take my son to a DAN! doctor (I know I know…might as well take him to hades, eh?) next month and see what she thinks.”_

    Again, nothing wrong with investigating these things but you have to be objective and honest. By going to a DAN! Doctor you’re not going to receive scientifically valid, impartial information. As well as listening to the ‘biomed’ people about mercury, listen to the science too.

    _”In reading your blog, and that of a couple other anti-biomed parents (sorry if that’s not a good term to use—just trying to be descriptive), some of them seem to be very frustrated when other parents of autistic kids won’t eschew the biomed approach. Some are even a bit aggressive about it, which is ridiculous, though they are very well-meaning.”_

    That’s a valid point. Things do ocassionaly get heated. There’s a hell of a lot at stake here, not just any one child’s autism but the whole future of autism research. We can’t, in my opinion, allow that research to sucked into absolutes. At some point we have to be honest and say that not only is there no _proof_ that mercury causes autism, there’s not even any reliable _evidence_ it does. A lot of people who advocate a link between mercury and autism seem to want to play an indefinite waiting game for some hypothetical paper to deliver that evidence. I believe that that wait has had ample time to deliver. Does that mean we rule out the possibility? Of course not. However it should mean we acknowledge that its an increasingly weak hypothesis and we need to turn to other possibilities.

    _”I’m leaning toward the biomed point of view because I’ve seen really good results just from dietary measures.”_

    I have to say I find that puzzling. There’s a range of totally disparate ideas that are lumped together under the general heading ‘biomed’ – it could easily be argued I’m a biomed parent if one so desired. But seeing good results in one area does not automatically validate all the other ideas. At its heart the question ‘does mercury/thiomersal/vaccines/ cause autism?’ is a science one. It can only be answered with good science. I don’t see how it can be answered by saying ‘yes, because the GFCF diet worked for me’.

    _”The thing is, though, that I (and I presume most of the “biomed” parents as well) truly believe that my child is biologically ill. I don’t think he is mentally, neurologically, or otherwise ill, just biologically ill (with neurological after-effects).”_

    OK, that’s your right – I’m glad you used the word ‘believe’. Again, what you’re postulating can only be answered with good science. So far, there’s no science to indicate that autism is a biological illness.

    _”but if he’s physically sick (as I believe he is), of COURSE I want him well.”_

    Again, understandable. But the key here is ‘ _if_ he is physically sick’. I’ve seen and read stories from a lot of parents trying biomed options and it seems like a continual downward slope to me. They start (as you did) with GFCF diets and that seems to have some effect (although that effect is on _health_ not _autism_ ) but they note it doesn’t eliminate the core attributes of autism so they move on to B12 sprays, megadose’s of vitamins and supplements and that doesn’t quite cut it either so they move on to chelation and again, that doesn’t do it either, so some start Lupron. The pattern’s repeated over and over. And at the start of each stage they report huge gains and swear that ‘this is it’ only to fall silent and wait for the next thing to come along. There are _thousands_ of parents on the various biomed groups – where are all the recovered kids? If we had thousands of recovered kids then this would be international front page news.

    _”I really did feel like I was losing him, and now I feel like he’s coming back to me. You can call me a sap or whatever you want, but I know my son is feeling better, doing better, and he’s happier. That’s what really matters.”_

    Sure. If your son is feeling better, doing better and happier then I have no issues at all. I don’t think you were ever losing him though. I do object to that.

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