Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

4/9/08

Can We Agree On This: Your Child Does NOT Have Autism?

So, I've been milling over this for a few weeks now. I realize some of my friends may disagree with me on it. I wonder if we are able to get past this hurdle, that perhaps those who are working for adult services can move forward, with real change?

Can we agree that perhaps, there are forms of autism--or perhaps something completely else (not autism, but rather vaccine encephalopathy or something like that?), that are either caused by or worsened by vaccines? Perhaps there are a very small number of children who have something going on with their mitochondria or their immune system, and it makes them susceptible to autistic-like features post-vaccine (or illness, allergen exposure, etc.). For those whose doctors can prove their child is such a case, step aside. I am not for the rebranding of autism ala Kirby, but for cases like these, I say call what your child has something other than autism.

Step aside, stand on a soapbox with a name other than autism. I realize you parents are passionate about your children, and about how you feel your child "became" autistic. But, what you may not realize, is that all the time you are in the media, writing, and visiting message boards spreading stories of so-called recovery and cures for autism, you are taking away from our message. Those of us who have either tried biomed treatments and had no success, those of us who have been tested for and found a proven genetic link, and those of us who feel strongly our child was born autistic--we are fighting for rights and services for our children when they become adults and for the many adult autistics living in the world today.

Every time someone goes on television or writes an article, telling the world that autism is reversible, or that an autistic child can be recovered, you are telling the world that there is no need for adult programs. If the message is that autism can be "cured," then why would anyone want to support or create services for adult autistics? if we can make a distinction between what your child has (not autism) and what my child has (autism), we can all move along further toward our (very different) goals.

Ethically, I have many disagreements with how autistics are often referred to by those who are adamant about recovery. I am saddened that so many parents have great difficulty seeing the gifts that their children are, and I also fear that such beliefs can pull some over the edge. But, for the sake of my child's future and for the benefit of adult autistics, I would be willing to overlook this for now. Allow us to make real change for our children--those who won't recover, and who will need some type of support throughout their adult years.

I am so tired of trying to fight the massive media attacks on vaccines, the profiles of those who have "successfully recovered" their children, and all the viciousness I feel from those who disagree with me. I want to blog and discuss all areas related to autism. However, lately it is those who are attempting to rebrand autism and find blame that are consuming the autism world. I'd love to move past this. Changing the diagnosis is the only way I can think of to make progress.



This is what I wrote when I was feeling much more stressed (& and frustrated, among other emotions) the other day:

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TO THOSE WHO FEEL THEIR CHILD'S "AUTISM" WAS CAUSED BY MERCURY, VACCINES, ENVIRONMENTAL TRIGGERS, AND SO ON:
CAN YOU START CALLING YOUR CHILD'S CONDITION MITO DYSFUNCTION OR VACCINE INJURY OR SOMETHING OTHER THAN AUTISM? THEN YOU CAN PACK YOUR BAGS AND LEAVE THE ISLAND. MY CHILD HAS AUTISM, NOT FROM VACCINES OR ANY OTHER ENVIRONMENTAL FACTOR. PERHAPS ONE DAY, IT WILL BE PROVEN THAT SOME CHILDREN HAVE AUTISTIC-LIKE FEATURES OR SYMPTOMS BECAUSE OF ALLERGIES OR SOMETHING ELSE. FINE. GET YOUR DAN TREATMENT AND 'HEAL' YOUR CHILD. BUT, DO NOT SPEAK FOR ME OR MY CHILD. DO NOT POUR MILLIONS OF DOLLARS INTO THIS VACCINE FAR-FETCHED THEORY. YOU ARE NOT HELPING US. YOU ARE NOT DOING ANYTHING FOR MY CHILD. WHEN MY CHILD BECOMES AN ADULT, YOU WILL HAVE DONE NOTHING TO HELP HER. YOU WILL NOT HAVE CREATED ANY NEW PROGRAMS OR SERVICES FOR ADULT AUTISTICS. MY CHILD WAS NOT HIT BY A BUS, SHE WAS NEVER MOWED OVER. SHE WAS BORN WITH AUTISM. SHE IS DOING WONDERFUL, AND I LOVE HER MORE THAN WORDS COULD EXPRESS. I NEED ASSURANCE THAT THE FUTURE WILL BE A HOPEFUL ONE. I WANT OPTIONS FOR HER, AND I WANT SOCIETY TO RESPECT HER AND SEE HOW TRULY AMAZING SHE IS. YOU DO NOT SPEAK FOR ME, I AM NOT PART OF THE SO-CALLED AUTISM COMMUNITY YOU CLAIM TO BE REPRESENTING. GO FIGHT YOUR FIGHT, BUT DO NOT CLAIM IT AS MY BATTLE TOO.

10 comments:

laurentius rex said...

I am sure there is more than one way to fry an egg.

Nothing is gained by this game of standing up and saying that my autism is the real one, your child's is not.

Autism is a loose and inexact diagnosis, based upon observed traits, the degree and list of those traits being added too and subtracted from over time.

There are people who were autistic but who are not now because the boundaries have moved.

Looking at it logically, what we have is a set of conditions called a spectrum based on some commonalities of outward appearance.

Experimentally it has been deduced that these appearances all derive from some neurological basis or bases, the which they are not being as yet wholly proven or delineated.

These neurological differences themselves can arise in a number of ways, just as if one has arthritis in a joint it could be caused by numerous different processes all having the same effect.

Autism is a chimera, it has no one cause, certainly not genetic, autism exists for reasons more complicated than that, those being the reasons why two different species can share outward appearance and funtion, and why pyramids appear in South America, and Egypt at different times.

There is a certain fatal inevitability toward certain things happening given a sufficient number of circumstances that predispose. What we get is a momentum which once a certain point is exceeded, cannot help but turn out the end event, I think it is mapped in Chaos Thery.

So it does not do, to say I am the real autism, and someone else is not, we simply do not know, and it is human arrogance and social trends all along that give certain manifestations more provenance and social cachet than others.

Autism is a mathematical outcome, and a semiotic instance. That is what it is for whichever way you look at it it's still Autism

http://www.larry-arnold.info/Neurodiversity/Mission/whichever.htm

Alyric said...

Mind if I quote you on that Larry and can I get a proper link? - that one seems to be cut off. In a very concise manner, you have managed to describe something I've been mulling over and mulling over and couldn't get it quite right in my head - at least not anywhere like you have.

S.L. said...

Thank you for that link. I just glanced at it, but will thoroughly read it this evening when I have more time. All of your information is accurate, indeed. I suppose I am so frustrated with hearing how horrible it is to have an autistic child by those in the media, and so sick of those claiming there is a 'cure' for autism (& those who choose not to inject our children are bad parents), and also, tired of hearing what people in the the spotlight have to say about adult autistics (or rather, to say they don't of any--as if they don't exist). I am frustrated, as every day that goes by, none of these people or organizations have done anything to actually help my child. The more those folks speak out against autism, the more stigma is attached to it and the more people will turn away from trying to assist adult autistics, hire them, etc. It's such a distraction.

I understand 100% about autism being a spectrum and how one gets the diagnosis. I just hear how much a lot of those people detest autism (& thus, autistics) and it sickens me. They are so obsessed with finding blame, getting their families into debt for the sake of "recovery," and telling the public only the negative aspects of autism, that it makes me wish they were in no way associated with me, my daughter, and all the many amazing autistic individuals I have come to know.

Thank you again for all your info, I suspect it may be helpful to many who read it. You'll have to excuse my emotions, it's hard being a mom (to such an incredible kid--in a world that often only sees the disabilities and make stereotypes about her and about autism in general) and not getting emotional over all this. :)

laurentius rex said...

try this http://tinyurl.com/6s77fy

S.L. said...

alyric:

I don't know if this will help, but I was able to cut & paste the link into the browser, and it worked properly.

VAB said...

I agree with Larry. But I think it will be useful in the future to have more clarity on the various autisms that are out there. The sort of ways in which one responds to mito-autism might be different to the ways one responds to Asperger-autism. We might also reintroduce some terms such as Semantic Pragmatic Language Disorder and talk about SPLD-autism, etc. Because, while I agree with Larry, I also agree with you and that guy in Nova Scotia who argues the same thing the other way around.

Bonnie said...

WOW I love your blog! I'm right there with you on the whole "my kids is cured" thing. My son didn't respond to the biomed route, it's been slow steady progress. Also, my son is not a tragedy, he is a unique individual who has something wonderful to contribute to society. Glad I found your blog!

Jo Ann said...

Cancer has many forms and many "causes" yet no one denies the diagnosis. In fact, for years I have been explaining autism like cancer. Breast cancer is different than colon cancer, but both are cancer.

My husband and my son have autism. They are very different people with very different issues, but both share many difficulties. Both have social issues, but for different reasons. However, they both can relate to the social problems. So I think parents and care givers need to leave the scientific issues to the scientists so we can focus on helping.
Just my 2 cents!

CS said...

Jo Ann, one of the best things you can do is stop comparing autism to cancer. One is deadly, one is not. Also, for those of us on the spectrum the comparison is hurtful.

laurentius rex said...

I am actually very close to completing a paper on the subjects I have been discussing here and elsewhere.

In the meantime I would recommend this paper by someone very much in the mainstream of autism research, which corresponds to a lot of my thinking on the subject
http://www.fragilex.org/HappeNatureNeuroscienceNov2006.pdf

http://tinyurl.com/67pgnj

Oh and to Alyric I am eminently qoutable just so long as I get an attribution.