BLOGGING ABOUT AUTISM
or how a spoonful of courtesy and common sense would do us all a boatload of good.
Every once in a while I get on the blogs and start reading about other people’s journey through autism with their family. It is interesting, but usually baffling to me how much venom and energy is wasted on these forums discussing controversy and ideology. I can’t get on board with any of it- I can’t stand the holier than thou neurodiversity people who look at their autism as an asset, they seem to be in denial to me. I have problems with anxiety, but that would certainly be the last thing I would want to define myself with, and I’d be happier without it. I also can’t stand the rabid parents on the other end who go on and on about finding a cure, and who are into all kinds of activism. I kinda think their time would be better spent with their child? Then there are the parents who turn their noses up at all of it and pat themselves firmly on the back for being sensible enough not to fall for any crazy alternative medicine scams. Keeping your mind firmly closed is about as useful as leaving it so wide open your brains fall out. I can’t help but wonder why there can’t be more civil discussion about what works and what doesn’t.
We have a really interesting set of circumstances at our house: Our daughter is high functioning, and has speech. Lots of speech! (In fact she loves reading the dictionary.) But on the other hand, she had sensory issues that were much more severe than most kids who are as high functioning. When we try therapies with her, she is better than most at telling us how she feels and what works. Also, her brave daddy shares some of her issues, and so he gladly acts as a guinea pig for new supplements and therapies. Because of this, we have been able to try out therapies and really gage their usefulness.
Plenty of people will go on for hours on their blogs about their opinions about how pointless and dangerous chelation is. They will be happy to explain to you that autistic kids don’t store mercury. Where’s the proof they shout- they will listen when there have been 20 duplicated double blind placebo controlled studies. Well, I say, the proof is in the pudding. Initially, we were skeptical. I think healthy skepticism is a good tool. But we did not form our opinion based on nothing. We did our homework and finally settled on Dr. Bradstreet for our daughter’s doctor. He had the right combination of an open mind while being firmly conservative. He suggested she have some chelation. We proceeded cautiously. We were careful to protect her with vitamins and minerals. What happened as a result is nothing short of a miracle. In a nutshell, our daughter’s sensory issues went away. All of them. I don’t mean they were lessened, or that over a period of three years we saw improvement- what I am saying, is within a week’s time, her sensory issues evaporated. She started telling us things like, Mom, I have a strange tingling in my fingers. The strange tingling turned out to be, um, feeling. We had been struggling for years with her handwriting. Her teacher at school, called me in a tizzy and asked us what we had done- Dorothy’s writing was miraculously beautiful! Turns out being able to feel your fingers helps your handwriting considerably. She started feeling pain- she could have an injection and not feel it before. She stopped bumping into walls and tripping. She told me that before chelation, she had trouble seeing because of all the dark lines and “sparkles” covering everything. (By the way, skeptics, seeing sparkly colors is a classic symptom of mercury poisoning.) Once she had the chelation, the dark lines and sparkles disappeared. Our daughter has a whole new way to experience the world. For those people who are contemptuous of attempts to make our autistic kids “normal” all I can say is, how can you argue with this? She loves her new found vision and abilities. We took her to the optometrist, and her glasses were now too strong. For me, the proof lies in whether or not it helps. When we looked at her before and after bloodwork, we were shocked at the amount of mercury she dumped. It was breathtaking to us. Chelation gets our stamp of approval. So the question is, why are we to be vilified for having a happy outcome?
Another controversial topic is the gfcf diet. I read a blog today from a father who seemed like he loved his autistic son more than anything, but he then went on to deride parents who “deprive their kids of normal food.” He seemed to think that the gfcf diet was just grasping at straws, and parents who used it were abusive. Well, my question from the beginning has always been, well, does it work? I can say affirmatively that it does work. My husband uses it to keep himself off the spectrum, and as for my daughter, she is a teenager now, and will tell you herself, when she has eaten something that is off her diet, she feels “buzzed” and “wiggy.” I know from watching her she certainly is calmer, more thoughtful and more social when on her diet. This father who was so contemptuous of parents like us goes on to lament his boy’s lack of speech- but he is not willing to sacrifice anything to help his boy find speech- I find that to be very sad. I have heard from other parents that their child’s speech improved dramatically after gfcf and chelation. We are not interested in the politics of autism, we are interested in results for our daughter’s well being and continued improvement.
Another topic that seems to get a lot of copy on the Internet is how upset people get about having to “fake it” and try all day to be someone they are not. Generally this is an adult Aspie who is talking about having to “behave” neurotypical all day long and how wearing and tiresome it is. They also like to complain about how awful society is for not accepting them for who they are. This group also seems to have some support from parent groups who deride any effort on the part of parents to “normalize” our children. I must be really slow on the uptake but I thought that was what parenting is? I don’t understand at all how teaching my daughter manners and how to be civil in society is a wrong. How is giving her the skills to get through a job interview wrong? The job interview is a perfect example of what I am talking about. I am not autistic. However, I am an artist, and a bit eccentric. I like to wear wacky clothes and ridiculous jewelry. If I was going for a job interview, however, I would swap that all out for a very boring business suit and sensible shoes. I would be on my best behavior. I would curb my tendency to laugh too loudly and scribble on everything. This is certainly “faking it” on my part, but it is by no means something above and beyond the call of duty, it is called being civilized. It may be difficult for my daughter to learn to keep her finger out of her nose in public, but it is certain necessary for her to do so if she wants to achieve her goals. I don’t think there is anything “unauthentic” about learning to discipline yourself.
Our high functioning children need to learn to adapt to society with out losing a bit of who they are inside. Part of that involves embracing autism, but I think too many people stop at the embracing part. We can empower our children to acknowledge their autism, and then become its master. The other night, we were at the regional spelling bee. My daughter was nervous, just like everyone else, but because she is autistic, she started making some random noises. I asked her: do you want to go up on stage tonight? Yes, she says. Well, I explain, they are not going to allow you up there if you are making noises. It would be too distracting to the other children. They wouldn’t be able to spell. Do you think you can stop? Yes, I can she says, and stops. We joke about getting her game face on, which is code for “acting normal” She gets it on. As she leaves me to go on stage, in front of a huge crowd, I whisper to her, remember, honey, you are autistic- you have such an unfair advantage over all those other kids! Her eyes twinkle because she knows her savant memory will leave all the other spellers in the dust. She placed pretty well, her nerves got the better of her in the end just like all the other kids who didn’t win that night. Being in the Bee at all was a huge success for her. She wanted to do it so badly she practiced for weeks. Would it have been better for her to remain “Authentic” and not have been able to participate?
The people who accuse parents of wanting to only normalize their children are just baiting people for attention. It is nonsense on stilts. I have never met a parent of an autistic child who wanted them to be any thing but happy and healthy. As for me, my daughter has absolute freedom to be as amazing and fabulous as she wants. In fact, now that we have been through all the treatment protocols and have her diet firmly in place, we are seeing more and more of her personality shine through, and the autism is fading into the background. Is she cured? Well, that is a loaded question, too, isn’t it? I would say, yes and no. I feel we have put her disease in a sort of remission, but there are lasting effects that we will always have with us.
I think I understand the anger and desperation which fuels a lot of the debate out there- I just think it is unproductive. Instead of focusing our energies and passion on ideology, I think it would be better if we focused it on compassion for individuals fighting a hard battle every day, parents and children, adults with autism and their families. One post I read today said parents who get online and complain about their life with an autistic child should be ashamed of themselves. How terrible they are for not loving their child enough! In my experience, parents of autistic children love their children desperately. But their battle with exhaustion, depression, stress, divorce, and constant crushing heartache is never addressed compassionately. The parents have needs too. They are judged as often as the children are. I think it would be better if we could all be nicer to each other and try to find some ways we could all buoy each other up instead of tearing each other down. But until that perfect day, it would probably be wiser if we all followed my Grandmother’s advice, if you can’t say anything nice, don’t say anything at all.