"I Don't Want B12 Shots to

Take Away My Aspergers, Mom!

KadburyIs

That was my argument 2 yrs ago. I got to admit I agree. It certainly wasn't my intention when they told me. From then to now. I am glad I have been able to. Each year I am becoming more and more convinced that this is not just a behavioral issue, rather a whole wellness issue.

Perhaps if you had read my blog, you would have known that they were vitamin deficient, many other health problems, or that they are prone to being very violent. Not just a little screaming hitting violent... I mean bashing heads, biting, stabbing you in the hand with a pencil type of violent.

I took this route because I wanted to avoid as much medicine as I could. And you know what, we've reduced meds, they reduced melltdowns, one is talking now. If you met my kids 2 years ago they clearly had problems, today you can hardly tell.

And I am not sure I would been so aggressive about it, if my children didn't hurt me or eachother so much, or if my oldest wasn't hallucinating, coming home from school calling themselves freaks or if we went in public they wouldn't spaz because they thought people were laughing at them.

I would have let them flap, drool or spin to their hearts content. For me, those are non issues.

It's been my journey that has convinced me, that I am doing the right thing

B-12 shots for treating autism are not evidence-based. Most supplements given for ASD are non-evidence based.

It sounds like you have been doing a lot of researching. I hope you keep it up -- I recommend sites like the Autism Science Foundation, SFARI, and INSAR for top-notch autism research and science. I also hope that your daughter continues to do well, that you find supportive community (and this is one, actually -- even though members feel free to criticize questionable actions), and come to peace with your decisions without needing to tell off other people. Ginalala

I did not say the shots or supplements where evidence based. I asked what besides "some" ABA therapies are evidence based? Not much that I know of. People love to say "oh that whole process is full of it but has nothing else to offer as a replacement. I have seen some of the sites you have listed and they seem to say the same things. Until this group of children come of age we won't know how the early interventions will effect there ability to marry, find a job, and live a normal life. I am at peace with my decision. It's the lack of scientific cohesion when it comes to treatments. Besides the suck an egg part. I am not sure how my post differs from yours. Besides the suck an egg part. lol. Questioning the people who question is all I was doing. Shannon Des Roches Rosa

We are not saying the same thing at all. I am questioning anecdotal accounts, you are questioning science. You can use the former as a starting point as long as you rigorously investigate according to the guidelines of the latter. The fact that science is not yet able to provide the answers you want in no way legitimizes alternative approaches.There is also your stated desire of a "normal" life for your child -- I'd recommend extensive reading accounts by adults with autism and Asperger's to help you understand how important it is to help our kids live the best life for *them*, and not subject them to our own and society's expectations of "normal" -- it can be extraordinarily damaging when when our zeal to support our kids doesn't include accommodating the square pegginess you mentioned. This is not the first generation of autistic children exposed to early interventions for autism, but it is the first exposed to potentially damaging pseudoscience. Most of which is based in sales, not actual science. Individual successes make great stories, but, again, should only be starting points. Ginalala

GinalalaShannon Des Roches Rosa

Well, I can tell you this much. I was a barely-functioning Aspie at a time when the diagnosis was rare and VERY new.There were no masses of Dr appointments, there was a diagnosis, and "Well, this explains why she is how she is." That's it. No attempting to make me "fit in", no 6-8 appointments weekly... not even online articles, support groups, etc. We were completely on our own.I married a wonderful Aspie man, and we both have jobs, friends, and great lives. Again, this is with no therapies, supplements, Drs, or anything, for our entire lives. (Aside from medicating for both of our ADD, as adults).While Aspergers AS A DIAGNOSIS is still fairly new, People who ARE Aspies - not a new thing. Many of the best and brightest from way back in history are suspected to have had Aspergers. They - and we - got by just fine without being subjected to this sort of medical/therapeutic hysteria.

GinalalaShannon Des Roches Rosa By the way, I recently blogged my feelings on "curing" Aspergers here: http://www.celebrationgeneration.com/blog/2011/11/...

The fact that science is not yet able to provide the answers you want in no way legitimizes alternative approaches.There is also your stated desire of a "normal" life for your child. <<<< Don't act like I am the only person who wants a "normal" child. People who have a child with cancer, diabetes, or asthma/allergies all want to have a normal child again. I want the best for her in whatever form it comes in. If she can sit at a computer and tell everyone what an a$% her mother was for taking her to all these doctors and trying all these different things. I will be the happiest person alive.I want her to be the best she can be. Even if she was NT I would have the same over all goal. Most of the Doctors state the same grim picture.I don't see that same picture. I can see her improving with ABA, O/T, S/P, and some bio medical. I will try to help her co-morbid conditions the best we can. I will not just sit on my hands and hope she recovers by wishing on stars. Very few people recover or improve with out any interventions. Celebr8nGenr8n is very lucky. I know other people with autism have had early interventions, BUT it has not been on the same level these children are receiving. I was at the autism society of America conference and some of the older parents asked me what ABA was. I think late on set Autism is treatable. I don't think science will ever have the answers I want. If they ever do it will be too late for us. I am fine with her being autistic. I am not fine with just waiting around for things that might never happen. Like her telling me how her day was when I ask her. Or when she starts talking and it trails off into babble. She will always have autism, but I will be damned if autism always has her. I am not going to dig a fox whole and wait for someone to tell me this is now proven without a doubt. I will use my best judgment and discretion and move ahead. There is more than one way of doing things. That doesn't make either of us evil or wrong. She can receive treatments without making her feel less than or broken. I don't run around saying "FIX THIS" and plop her down on one Doctors table after another. Shannon Des Roches Rosa

I recommend reading Stimey's recent essay Not Even Wrong, on how to support our kids and the adults they will eventually become: http://is.gd/PqB9Uh. I don't know a single autism parent who sits on their hands or wishes on the stars -- but part of our efforts need to include helping other parents make good decisions and cultivate healthy attitudes on our children's behalf -- when we're not agitating for best practices in legislation, insurance, education, science, social, and medical arenas that affect or impede our children's ability to maximize their quality of life and learning. That has nothing to do with our children's developmental or physical needs, and everything to do with their rights as human beings. Biomedical models of autism as a disease or the pursuit "normal" rarely help in any of those areas.

Ginalala

I also recommend reading Steve Silberman's recent interview with Autistic activist Ari Ne'eman -- who has dedicated himself to pursuing rights for everyone who merits a disability label, and not just for those who are able to communicate through traditional means: http://blogs.plos.org/neurotribes/2011/11/01/white... An excerpt:

"When a child or adult is called “recovered,” they don’t change into a different person. All the things — good and bad — that we call autism don’t go away because you lose a word. Instead, that person no longer has language for what they experience. That person goes through the same struggles, the same difficulties, but lacks the context and the community to know how that it is okay for them to be who they are. Sometimes that prevents them from accessing needed help. Other times it just traps them in a place where they have to constantly look over their shoulder, worrying about who might notice them being just a little bit “off.” Either way, it isn’t an outcome we should wish upon anyone.

"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."

Ginalala

GinalalaShannon Des Roches Rosa Three words for you: munchausen by proxyAspergers isn't CANCER! I CANNOT believe that anyone would even make such a comparison. You want your aspie daughter to tell you how her day was? Try not seeing WHO SHE IS as a DISEASE!!

Ginalala Exactly. The things we have done have not been all at one. It's been evolving. Take for instance. Casin. That is not an issue. They have a lactose issue, therefore they can eat cheese or yogurt, but not milk or ice cream. We have never started several anythings at one time. If it works, we stick with it, if it doesn't we toss is.

Celebr8nGenr8n

You know.. my husband is aspie too. And this is always a topic for us. But you know, it has helped us cop with eacther, and more importantly him with his kids.

Like I said before. I don't think I would have done this, if they didn't have so violent out burst. I'm not sure you ever stabbed your mother in a hand because she was standing beside you. Or perhaps you didn't bite your mother because she wanted to hug you. Or that you threw your brother down the stairs because he was in your way. Or that you bashed your baby brothers head in the wall when you were 2.

Did I have a violent up bring.. no.. did my husband.. not in the least. Were we violent with our children... no.

If it wasn't for these very issues, I don't think I would have. I would've let them spin, drool, flap, and stay non-verbal until their hearts content.

But when you are faced with behavior like this, from children from about the age of 1 and on.... you want to help them. When I started. I wasn't phased by the lack hugs, the eye contact, or the speech. That was a non-issue for me. It was the meltdowns that were ungodly. Each child would have 9-10 a day, lasting for an hour or more at a time. It has exhausting and at the time hopeless. It was either help my kids or commit them. And I was not going to comment them. I didn't know about OCD, autism, aniexty or anything else. I honestly believed that I was the worst parent in the world and they were so aweful because of me.

Truthfully, I wished I had known sooner. But the doctors all told me it was because of my parenting.. That's a tough thing to swallow when you are covered in bite marks. I literally looked like my husband was beating me.. no one believe me that it was the kids.

I only wished you could have fallowed my journey. Could have known my sorrow and heartbreak, and perhaps understand that it was never been a fix them issue. I honestly enjoy their quirkiness it was violent behavior that started me on this path.

aspieside truthfully, that is why I wrote it. I thought he was so cute. And I was proud of his bravery & reasoning.

Sharon Morris Well because, this has been evolving over 2 years now We started with OT & ST. Then visual & PT 6mos later. These shots are very new and the results were instant. In fact, the day before they are do, Zeke stopping looking and interacting, and Gabe can't sit still to focus on anything. I treated GF the same way, only one food a week.. it took a year to change their diet. Other then OT & ST have I started at the same time. Because I felt the same way too.

traceykinohio Thank you.. I really appreciate that. Honestly I am just getting to these. I didn't know there was such a heated response to this entire of mine.

Shannon Des Roches Rosa you know, it doesn't have to be if it works. We've reduced their meds, they are bed wedding less, no meltdowns, making friends, able to have a two sided conversation, no fighting... you know.. two years ago I would have agreed with you. But you should see my kids today.. They are really doing well. Visual therapy will be done in a few months, and I am hoping that OT & ST will be too..