Wednesday, April 3, 2013

Does autism need cured or not?

I will finish the last part in the natural treatment for Tuberous Sclerosis, but I felt it was important given the time of year that I write this article. It is April, and April is Autism Awareness Month. Though most talk about finding a cure, there are those--sometimes mothers but often adults themselves who have autism, that argue that autism is simply a difference in the way one views the world, and to argue that it is a disease is like arguing that being Jewish needs cured--it is prejudiced, and is an effort to get rid of anyone different than ourselves.






I have read a few articles over the last few years from adults with autism, arguing that very thing--that to try to take away autism is to take away a piece of their personality, and that they don't need or want to be cured. The most recent article I've read on this subject can be found here: April is the Worst Month.

I recommend reading her article to understand this point of view, where they are coming from. Her argument is certainly valid. After all, she has grown up with, and still has, autism. Surely she is in a strong place from which to speak about it.

But, I would argue the issue is not so black and white. For many parents, their children getting an autism "diagnosis" has been helpful in that it has gotten them the help they need to be able to more easily function in the world, or gotten their parents the help they need to better understand their children and enter their world. The unfortunate thing about an autism diagnosis, however, is that autism is not "one thing". It is a spectrum, and it can look very different from one person to the next. There is a common phrase, "When you've met one person with autism, you've met one person with autism."

People will point to highly functioning people with autism or who were believed to have autism, like Albert Einstein or Temple Grandin. It is absolutely true that autism does NOT equal ignorance, inability to think or anything of the sort. There is indeed a lot of misunderstanding surrounding autism, and society as a whole needs to work harder to understand the world of those living with autism or raising a child with autism. The author makes many valid points.

I have two children. My five year old son has sensory processing disorder that can be managed fairly well with diet--but if he were to eat a standard American diet, he would be a very different, very agitated, very stressed child. He is very smart, and he talked very early. I recently learned that he memorized my cell phone number after hearing me repeat it *once* in passing. He is 5. I can barely remember phone numbers now. He remembers so many things, years later, that I cannot comprehend how he does so. When his SPD is not as well controlled, he can hear things I can't hear, smell things I don't smell (much akin to the nose of a pregnant woman or dog!), and visually pick up on things I don't notice. His brain is on hyperdrive, and one could certainly find pros to having such a condition. However, I considered it a case of disease--dis-ease--because he was not at ease with himself or the world. He suffered by the simplest things that could not be avoided, and not just people judging him or my discipline measures or seemingly lack thereof. He was scared and terrified by the sun, by flushing toilets, by hairbrushes and water and wind. At three years old he had to be put under and had fillings in all his molars because he refused for months on end to brush his teeth because it tickled too much, and if i were to force him you'd think i was cutting off his arms. It was literally torture for him. These were not issues of him not being understood by those around him, or me wishing he were "like everyone else". I had some of the same characteristics as a child (and was just considered by everyone to be whiny), so I understand somewhat where he was coming from. But my baby was suffering. When he was 2 years old, he accidentally had a bite of pudding. I already knew he reacted negatively to cow's milk so he never got it, but this time he had one bite. He had been playing calmly in his bedroom, and out of the blue, with no one else around, he started screaming hysterically. I went in the room, and he would not make eye contact with me, he began hugging himself and rocking back and forth screaming. I tried to run to him and hold him, and he pulled away like my hand was acid. He ran to his *metal* closet doors and began banging his head into them and he did this for probably twenty minutes before he sat back down in the middle of the floor and began crying some more. I finally realized what was happening, told him I loved him and I would be in the other room and waited for him to calm down. He eventually fell asleep in the middle of the living room floor. This was very uncharacteristic for him. But, he had always been gluten free (I've been for 10 years), he had been dairy free his entire life as well. (and both of my children are not vaccinated for other reasons than fear of autism...that is another story for another time...). The one bite of pudding turned him into another person entirely. Any time he eats certain foods or eats too many carbs or fake foods, he very clearly shows behaviors of someone on the spectrum, and he very much seems to be in a state of dis-ease. He is suffering. It is not just about helping people understand him. The sun will not shine less brightly because my son's eyes cannot handle the light.

My daughter is three. She has a genetic tumor disease called Tuberous Sclerosis Complex, and as a result of the tumors in her brain, she has medically refractory epilepsy. She is developmentally delayed and has been very slow to speak. Because Tuberous Sclerosis is the leading genetic cause of both epilepsy and autism, she has regularly been evaluated to see if she is developing or has autism. Thus far, she has not been given a diagnosis, but lately I've seen certain behaviors very characteristic of the condition despite her being very social, very interactive, and has great eye contact. These behaviors pop up most when she is stressed by situations beyond mine or anyone else's control and it makes it hard for her to function in public places even if said places were as understanding and accommodating as possible.

I do not want my children to unnecessarily suffer. Period. It has nothing to do with wanting them to be like everyone else, or me not wanting inconvenienced by their differences. Not everyone feels as though they suffer with autism, and if they are happy with how they are, people should be understanding and respectful of that. There are certain talents and gifts that people with autism can offer the world that we should honor, ones the rest of us simply do not possess. Art, revolutionary thought in science and math, work with animals...just to name a few. But for those who are suffering....who are getting concussions and bloody faces from slamming their faces into hard surfaces to try to make the sensory overload stop...please don't say they are fine just as they are, because you are fine as you are. That is not understanding. There are also others with severe autism who have found a way for their voices to be heard, and they have made it quite clear that they wish they did not have the symptoms that come with autism.



And last, I should add that research has shown that autism is not simply a unique way of seeing with and interacting with ones'  world. It is often linked with very real disease in the gut and the immune system. Those with severe autism often struggle with both diarrhea and constipation, eczema, allergies, getting sick more often than others, and measurable vitamin deficiencies. These are the very definition of disease, and no amount of understanding their world will make those problems go away or be less problematic.