April 19, 2012

More Aware Than I Want to Be

My apologies for leaving you all hanging for over a week. I know it was tough to live without my blog updates but I'm here now. All is well again.

April is Autism Awareness month. In the past, I've posted about going through the initial diagnosis with my son, Bubba, and I've blogged about his progress since then. I've shared with all of you the ups and downs and joy and tears of living with a child with Autism. I've shared my hopes and fears for him, my struggle to come to terms with being a mom of a kid with a disability and dealing with siblings who don't understand why their brother is different. This year I wanted to do something different. This post is coming so late in the month because it's taken me awhile to figure out exactly what I wanted to say this time. What I'm going to share about Autism this April is strictly my opinion and others will not agree with me. I'm okay with that.

When I first started going through the whole Autism "ordeal", the official numbers were 1 in 250 children would be diagnosed with Autism. Nine years later that number has changed to 1 in 88. One out of every 88 kids will have a diagnosis of Autism or a diagnosis on the Autism spectrum. That is mind boggling. It's scary. It's heartbreaking. And it's beyond frustrating.

I'm on the fence about many things you hear about in the media nowadays regarding Autism. As a whole, I feel like our society is more aware of Autism and what it entails, as opposed to even 10 years ago when people still mainly associated the word with Rain Man. I am thankful to organizations like Autism Speaks and celebrities like Holly Robinson Peete and Jenny McCarthy for getting media attention to the epidemic this country is facing. Raising awareness is so important. There is not enough funding for research into Autism--what causes it, what can be done to prevent it, how to effectively deal with it--so having big names out there raising money is a good thing. However, I feel like there are so many misconceptions being floated around that I sometimes wonder if they are doing more damage than good.

First, let me tell you a fact. While most Autistic kids have many similar traits, you will have a hard time finding 2 kids who are affected exactly the same, even among siblings on the spectrum. The span of "symptoms" (for lack of a better term) is so vast that it is next to impossible to do any blind studies or supported testing on these kids. Some have food allergies, some are hypersensitive, some are hyposensitive, some are non-verbal, some speak through echolalia (repeating words or phrases they hear as opposed to using their own words), some are considered high-functioning and can be integrated into classes with "typical" kids, while others will always be completely dependent on their parents and caregivers for even their basic life functions. Because there is no set pattern of traits or symptoms, there is no one way of dealing with Autism and no way to effectively test and research how best to treat these children.

Okay, that being said, let me share with you my stand on the whole issue. I have friends who believe that all the stories coming out right now about these kids being helped or even "cured" through special diets or alternative methods are pure bunk. After all, if they were such wonder cures, why aren't all kids Autism free? (Side note: there is no "curing" Autism. If you met my son today, you'd never guess he had Autism. He is not cured, he's just progressed enough that we are able to deal with his issues, issues that he will have to work around his entire life.) I also have friends who believe that you just need to find the right organic-based diet and weed out all the dairy/wheat/artificial flavors/fill-in-the-blank-dietary-allergy and these kids will instantly become different children--the non-verbal start speaking, the violent kids start calming down and previously detached kids suddenly start engaging their parents.

When we first got an inkling of what was going on with Bubba, I read everything I could get my hands on. I researched every article I could find. I consulted with pediatricians, therapists and Autism specialists. I read a 200 page medical report written in medical-ese detailing the findings of alternative treatments such as chelation and the effect of mercury on a child's system. I tried everything out there. We went gluten- and casein-free for my son. We refused vaccines. We did allergy testing. We spent hours working one on one with him on things as basic as eye contact. We taught him sign language, took him to speech therapy and occupational therapy, spent time at the Y doing swim therapy, tried different medications. I approached Bubba's pediatrician with the medical report and proceeded to inform him of all the latest research on Autism only to be informed it was all garbage and "anecdotal".

I've grown to hate the word anecdotal. If something can't be quantified through carefully controlled research, most doctors will dismiss it outright. Remember when I said Autistic kids are all different? That makes it next to impossible to do any carefully controlled research. You won't get the same results when your test subjects all have different traits that you're testing against. So if my kid gets the flu I will take him to the doctor. A broken bone, a rash, an ear infection? He'll see the doctor. But Autism issues? Forget it. I know more about what's going on in regards to Autism than most doctors. And the doctors that actually do spend their careers in the Autism field risk being ostracized by the medical community for embracing alternative treatments and therapies and unpopular theories that go against Big Pharmacy.

I am thankful for anything that brings awareness to the Autism epidemic--even if I don't necessarily believe that people in general are being educated about what families with Autism are really dealing with. If a child dies, the nation cries out. But if a child will spend the rest of his life locked in his mind, being completely dependent on his parents for everything (imagine changing diapers on a 200 pound, 6ft "child", or restraining that child if he has a sensory-triggered meltdown in public) which frequently causes parents to fight and eventually divorce, if that child wanders away from home and gets lost, if that child is confronted by a police officer but acts "shifty" because he doesn't grasp social cues and gets arrested which, due to the unwanted touching, causes the child to get violent and end up hurt by the officer (true story), if that child will be dependent on the state for therapy or housing or medical for the rest of his life (all of which are very real possibilities, and for many children daily realities), no one gets upset. There is no national cry for answers, no demand for more research funding or acceptance of whatever offbeat treatment it takes for our kids to be able to function even marginally better in society.

To the mom who can tell you to the minute when her child regressed into a non-verbal Autistic child and will stake her life on it being caused by her child's vaccine? I say, you are absolutely right. You know your child. Don't let anyone bully you into saying it wasn't that vaccine. To the mom who radically overhauled her family's diet so that her child would stop having psychotic episodes brought on by a severe allergy to wheat? I say I'm impressed. Keep at it. Giving up bread for the rest of your life is a small price to pay for making that child's (and your) life a bit easier. To the mom who won't try anything that doesn't come straight from her traditional pediatrician? This is your child. Only you know what is best for him/her and what your family can deal with. Most of the things that I've heard have helped other kids I've tried with Bubba. Hardly any of them made a difference for him. But that doesn't mean I don't believe they work. They just didn't work for us. And I will mention every single one of them to any mother who comes to me looking for advice in dealing with her Autistic child. I believe that as moms we know our children best. If a mom tells me removing red dye from her kid's diet made a difference, then I believe she's right. That doesn't mean it will work for everyone but if it helped one child, it's a worthy option.

I don't agree with most of the views of Autism Speaks because they are not in support of what many see as alternative methods. I don't agree with Jenny McCarthy who has convinced many people that a special diet is the magical cure. I don't agree with parents who aren't willing to try anything and everything (that isn't harmful to their children) in an effort to find even ONE thing that makes a difference. If I hear that something worked for one child, I figure it is worth trying. How do I know it won't work for Bubba unless I try it? But I do agree that we are all after the same thing--a better life for our children and the hope that we can somehow slow the bleed and keep other children from ending up with a similar diagnosis. And for that reason, I am in support of anything that will get others looking into Autism. Whether or not they cause any national "awareness" is questionable, but if the efforts of these organizations and individuals cause one person to try to better understand what is happening to our children, then I am in full support.

4 comments:

  1. I love you, your strength and determination

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  2. for me it was finding things that did engage him and coming up with the alternatives if it didnt....Nick is now finishing his first year at a math science and arts academy that he got a FULL scholarship to because he can handle computers. Ive found that he loves to hold my hand now that ive stopped insisting on it...he lives to find out how to make a photon gun like on ghostbusters, he wants a delorean like on back to the future and his little brother drives him crazy....sounds like a "typical child" he still has his moments of issue but we just breathe through it....he uses his words now...i love that no one can "tell" he has autism....i hated that phrase too...
    "oh he doesnt look autistic!" what does autism look like? to me it looks like a child who has a vivid imagination and a family who loves him because of who he is, not in spite of it!! im very proud of both of our families, Sherri, yours and mine!!!

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  3. Sheri...I just love this. =)
    “An open mind leaves a chance for someone to drop a worthwhile thought in it”

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  4. Sheri, I love you blog and your writing. I love reading about the life and love and trials you and your family go through. I have watched you grow and have seen incredible strength, compassion. love and patience come from you. I love Bubba with my heart and soul and am so glad for him that his has progressed to the point he has. I give the full credit to you and your determination to give you son the best life you can and to push and prod him into doing the best and being the best young man he can be. I am proud to call you my daughter!

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