As I am sure many people know, the Autism Vox blog was shut down earlier this year when Kristina Chew jumped ship to spread the good word of Acceptance at change.org instead. There was some talk about the blog being taken over by another blogger.
It appears that has now happened and so far the results are better than the original. The new bloggers, Jeff Stimpson and Jill Cornfield seem to have a more grounded approach to autism than did their predecessor. When they are discussing their son Alex they seem to be willing to talk about the good and the bad and to acknowledge that raising a child on the spectrum can be a real challenge.
But of course, there are those that seem to be displeased with the direction of the blog. Most notably those from the neurodiverse "Autism Hub" seem to be less than pleased with the perceived "negativity" of the initial introduction post. If you look at the comments you find ones like this one from "shell":
Wow, surprised to see something like this on the Hub.
And this one from Clay, a self-described "aspie":
It’s a mistake. It appears that someone with quite a different “take” on autism has taken over Kristina’s old “Autism Vox” blog, and now wants to piss and moan about how tough it is to raise an autistic child, and make themselves out as martyrs.
Of course people on the hub are surprised to see someone actually talking about the fact that autism isn't just about being quirky and socially awkward. The reality distortion field there does not seem to allow for the fact that autism is not just a "difference" that needs to be "accepted" but rather is a severe disorder that can profoundly impact the families that are effected.
No surprise there.
There was a follow up post about the reaction to the initial post. It is laugh out loud funny and shows a real sense of humor - something that is absolutely critical to being able to deal with raising a child on the spectrum.
So congratulations to Jeff and Jill on a good start. The autism world needs more people who are willing to talk publicly about the reality of their lives with the autism - the good and the bad.
With all due respect to the current bloggers, who obviously care deeply for their children, I find the blog to be rambly and lacking direction. Yes- there are negatives surrounding autism and autistic behavior, many of them extremely tragic such as the recent death of a 14 year old on a camping trip. Others are difficult to accept and understand, such as children who may never be able to live independently- it's a lost dream. Even with a lost dream, though, you can have a good life and create new dreams.
ReplyDeleteI found Dr. Chew to cover the difficulties without becoming overwhelmed by them. A vent about persevering behavior does have its place, however unless there is a underlying, well thought out message I don't see the purpose of putting it on a blog. Nor do I see a purpose in calling autism a "bully", and think it treads dangerously close to calling the autistic person a "bully".
I am raising my brother, who is autistic- he is with me more than his mother. The original Autism Vox helped me accept him for who he is in a way no other blog did. No- it's not all peaches and cream, and I never had the impression Dr. Chew felt that way. She spoke about having to "hold" or restrain her son to prevent him from hurting himself. She spoke of hours of therapy and struggles to teach basic skills to a child who struggled more than a 'typical' child.
At the same time, other media made autism seem as if it was a death sentence, which it is not. Autism, like all areas of life, is not one dimensional.
Nichole, I think I understand where you are coming from. Dr. Chew is a good writer and she did write about the difficulties with her son in straightforward way without dwelling too much on the negatives. And the current Autism Vox is less organized than it used to be.
ReplyDeleteBut, and this is the problem for me, the old Autism Vox was a part of the neurodiversity movement and Dr Chew did her part to further an agenda of "accepting" rather than treating autism. This movement is extremely harmful to children with autism as it pushes the idea that autism is just a difference to be accepted and actively discourages treating or attempting to "cure" it.
If you are intersted I believe that Dr. Chew is still writing, now at her own site located at http://www.kristinachew.com/Site/vox/vox.html
There is no cure for autism, though. So how can it be harming kids to give up longing for something we can't have?
ReplyDeleteHi Ettina,
ReplyDeleteWhile it is true that there is no cure for autism today, there is a very good chance that there will be one in the future. If you look at the progress made in other conditions that were once thought to be permanent, life-long conditions, you would see that what we think today isn't always the case in the future.
Consider Rett's (a form of autism), this condition has been thought to be something that a person had for life. However, in the past year or so, researchers have been able to successfully reverse the symptoms of the condition in adult mice. That might not sound like much but it shows that the biological part of the condition might be able to be "cured" in people.
But more importantly, there are many things that you can do today to help a child with autism. I am not talking about the controversial treatments that are out there but rather reasonable things that can be done to improve quality of life and ability to function today.
Yet it has been my experience that the ND movement is against trying things that could help that because that would be "changing" who the person is instead of accepting them. For example, many ND folk are against behavioral therapy such as ABA because they think that it is an attempt to force "normalcy" on a child. But ABA style treatments can be a very valuable way to teach children with autism skills that they are missing - it certainly has helped my children.
So the problem, to me, is the idea that trying to correct the underling problems of autism is wrong. There might not be a cure but you can certainly chip away at the disabling aspects of autism and certainly give children with autism a better chance in life.
And then there is the small but very real chance that, if you happen to hit on the right combination of therapies and hard work (from the child), you will be able to help your child "recover" from their autism to the point were they can function without any difficulties. There isn't any good data on this but what little there is suggests this can happen in 10 to 20 percent of all cases.