Susan's Blog

Friday, January 16, 2009

Hang Me For A Lion

Can the lion lay down with the lamb? Call me a Naive Pollyanna, but I do believe that most parents in this life want everything good for their kids. The great majority — and I mean all but a (very) small percentage of disturbed people — love their children and want nothing but for their kids to be happy and healthy.

I do not believe that the people practicing “biomedical” interventions for their autistic children are bad parents, not at all. In fact, the particular example I link to is an old and dear friend of mine. I do not believe that, if you feel that autism is heartbreaking and hard and sad that you are a bigot or narrowminded. I believe that these people are more likely than not, devoting their lives to helping their children. They may be practicing alternative methods not (yet) backed up by science, but they are trying to help their children live and thrive in a very difficult, demanding world.

But likewise, I do not believe that if you accept your child as he is and only seek to create greater awareness in the world at large, about acceptance and empowerment of autistic people, that you are neglecting your child’s growth and development. That if you decry unproven science, and that you seek to protect your child from any possible harm from potentially harmful practices and therapies, that you are sick and trying to keep your child disabled. The example I have linked to here is also someone I love (from across the world) and respect.

Most parents are only thinking of their children. I have interviewed so many for my book at this point. Not just people who are Neurodiversists. I have also interviewed Biomedicalists (these are my own awkward terms). I have tried to straddle all the different worlds because in the end there is just the one world: love for your child.

Of course there are crazies and exceptions. But I believe that the majority of us want what we believe is best for our kids, first and foremost. We are programmed that way (see Theory of Evolution).

I think that the angry in-fighting has to stop and we all have to make room for many different minds and stop all the hatred of the Other Side. Because the other side is most likely just another parent who loves her kid as much as you love yours.


Nicely put. I do, however, draw the line when *either* approach could cause actual harm to a person.

— added by Niksmom on Friday, January 16, 2009 at 10:52 am

I think you mean, “I, too, draw the line when either approach could cause actual harm to a person” because implicit in what I am saying is about helping, not harming, loved ones.

— added by Susan Senator on Friday, January 16, 2009 at 1:11 pm

My parents taught my sister, brother and myself to accept people for what they are and don’t judge others based on what they believe. I try to keep an open mind toward different treatments and programs depending on what will help Jarrett most and what will reap the greatest benefit. I guess you could call me a neurodiversist but if a biomedical approach helps your child most then there is nothing wrong with giving it a try.

— added by cameramom on Friday, January 16, 2009 at 1:18 pm


— added by A Momma Just Trying to Make it Through the Day on Friday, January 16, 2009 at 2:00 pm

I waver between both aspects, and I find the acceptance piece much more tolerable, less frustrating, and often more rewarding. However something keeps me pumping vities in and considering attendance at various biomed conferences. Having said that I have to say biomed stuff also makes me feel like I’m not ever doing enough, and then I have to ask how much can I do, and how much am I willing to try? Ugh, hurts my brain, but not as much as it used to!

— added by Bonnie on Friday, January 16, 2009 at 2:58 pm

I am kind of confused with today’s blog. Angry in-fighting? I don’t know what that means. Who is doing the fighting and what is there to fight about? Is it in regards to different treatment options such as one method or drug is better than another, etc? Auism is not a one size fits all entity, and it is the ambiguity of it that makes it so frustrating. I have had parents who swore by the gluten free diet, but it did absolutely, positively nothing for my son, so we dropped it and when on to something else. Even though it was not a success for us, I would never, ever, intimate that parents who choose or don’t choose this do not love their children. When did we get to “I don’t agree with what you are doing or saying, so therefore you must not love your child?”

— added by Sharon L. on Friday, January 16, 2009 at 4:00 pm

Other parents on other email groups fight. There are sometimes death threats made from one side to the other, relating to belief (or not) in the vaccine-causation theory. There is a lot of mudslinging on either side. You’re lucky not to have encountered it. So I am asking for us all to give each other a break.

— added by Susan Senator on Friday, January 16, 2009 at 4:10 pm

Thanks for this post, Sue. When my son was a toddler and it became clear that he was on the spectrum, I, like most parents, found myself searching for information and support on the web. I was astounded and confused by what seemed like a battle between the biomed and the ND crowds — and of course, at the time I was naive as to what those terms even meant. I really didn’t get the controversy. If ever there was a case which could have many different inroads, autism seemed to be it to me. I still don’t understand why one parent would insist that because something did or didn’t work for their child that that somehow made other parents wrong in their attempts to do what they thought was best in their own case. For me, I believe very much in a post you wrote a couple years ago in which you said maybe there were many types of autisms. That essay summed it up for me and also explains why diet made a surprisingly huge difference for my son but had very little impact on others I know. This divide between camps is so unfortunate and ultimately takes attention away from the real issues — being with our kids, loving our kids, and helping them have the best life possible. And for me personally, it always makes me feel like I’m in limbo without my own tribe because philosophically I’m really a ND-type mom, but whenever someone knows that my son is GFCF and (gasp) takes supplements, I feel immediately dismissed as someone who must be crazy. That may be an overstatement, but there’s an assumption by many that any claim to progress without a prescription is just delusional and wishful thinking.

I, too, wish this sort of infighting would stop. I don’t think anyone benefits, least of all, our children.

— added by Anonymous on Friday, January 16, 2009 at 6:59 pm

I find the absolutes of both sides dangerous and damaging.

There is no such thing as a cure. Social, behaviour and a learning disability will probably always be delayed and need to be taught.

I do have one that is dairy intolerant, one that isn’t but that was the extent of our travels into the land of “biomed”.

I don’t believe in letting someone be less than they can be all in the name of “acceptance”. There is growth, education and independance. Why would you let a child “evolve” and require support the rest of their lives, if you can educate them to the point of living independantly. Not all will make it that far… but why not give them the best foundation you can.

Why does society in general have to make all the concessions? Why doesn’t those with Autism meet society half way? Why do the “neurodiverse” not have those autistics – like Dr. Temple Grandin – on their “bandwagon”?? I know, b/c I saw her speak…. She believe in education and becoming part of society… not society making the accommodations.

I don’t believe in unending, hours on end therapies – been there… disaster – but I do believe in 30min/day of extra “homework”.

Our path is right up the middle, Our path is our own. That’s how it should be. “Neither speak for me”.


— added by farmwifetwo on Friday, January 16, 2009 at 7:58 pm

The reason why we neurodiverse do not have Temple Grandin on our side is that she does not engage in politics therefore does not understand the social situation of autism nor the import of all the arguments, she just takes the money and speaks.

One can try and engage her but it is futile, because her mind is made up on that score.

As for the oldest parents organisation out there the NAS in the UK, that is an organisation that has never taken the biomedical route (that seems to be a modern fad) but has taken the pragmatic one, in fostering education and human rights. You compare that to Autism Speaks and even the ASA in the US and you see two completely different approaches and I know which is more effective.

One might publicly see my pronouncements on blogs and such, but that does not mean I do not work pragmatically in this world either, within the NAS and through the School of Education in Birmingham.

— added by The author on Saturday, January 17, 2009 at 4:44 am

I could not agree more. I also remember that blog entry that Stacey mentioned and I think that sums it up. Some of our kids are born this way, some are not. I do not think vaccines caused my son’s neurological problems but that doesn’t mean that it didn’t happen to anyone or that it isn’t worth researching!

— added by Anonymous on Saturday, January 17, 2009 at 9:31 am

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