Yes, a Cure for Autism would be Nice
Some people say that we don’t need a cure for autism because it isn’t a disorder, and that people are just different. Well, forget that! A legitimate cure would have been so damn nice when my brother was diagnosed with autism. I know that there are high functioning and extremely intelligent autistic individuals out there that love themselves and wouldn’t want to change things, but they are not the majority. Also, about 10% of autistic individuals are savants. This means that they are extremely talented in one or more subjects/activities. Again, this is not majority. The majority of autistic people are medium to low functioning and these cases are what my post is about. In many cases, mental retardation accompanies autism. My brother has medium functioning autism with medium mental retardation. I’m not trying to offend anyone, I’m just stating the facts.
When my brother was young, he was mostly taken care of by my mom. It was a very emotionally taxing ordeal for her. I remember that when he was 7 years old, he wasn’t potty trained. His verbal ability is extremely limited, so communication was scarce and his attempts to communicate were hard to decipher. I forget, what his IQ was but it was in the 30-80 range. Sometimes, he would throw tantrums and not move from one place so my mom would have to wrestle with him to get him back into the house. Out of all the ordeals she went through, I truly believe the worst one was that he would never show affection. For me, I was heart broken that he wasn’t really able to be a true brother. I so badly wanted a sibling that I could talk and relate to, a brother that I can experience family life with. But I had no sibling companionship since he wasn’t able to do something like that. Life was lonely for me back then. And then when my brother was 8, my parents divorced. I lived with my dad and my brother went off to a special home. Why did he go off to a home? Well my mom had to work full time to support herself and couldn’t possibly be a full time caretaker for my brother. And my dad had to do the same of course. But still, I can really understand couples who send their children to these homes because raising an autistic kid can make them quite mentally unstable. Sadly to say, my brother’s future is uncertain and government programs are inadequate.
To say the least, I hate autism and would love a cure that can be administered to young children. Don’t tell me that the desire for a cure is wrong. It’s not okay that my brother cant tell us his wants and needs. It’s not okay that sometimes, he cries and when we ask him what’s wrong, he doesn’t have the ability to communicate with us. It’s heartbreaking for all of us to see someone so important to us to be deprived of so much. It’s not a crime for us to want more for him. Don’t pretend that autism is a blessing. Would you wish autism for yourself and others? I don’t think so. He deserves to live a normal life like everyone else. Don’t take that hope away from future autistic kids.
Note: This is NOT a post about high functioning individuals with autism.
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The problem is not cure but reather dealing with autism.When dealing with autism, just as in most other disorders, you will be faced with a number of treatment options for yourself or your child. These include treatments that are educational, behavioral, biomedical, nutritional, and sensory. Unfortunately, for patients who are not affluent or who do not have good medical insurance, the cost of these treatments can be pricier than what they can afford. One way to ensure that you or your child receives the best possible treatment for autism is to carefully monitor the effects a treatment has over time. By finding out which treatments work and which do not, you can stop paying for the ineffective methods and put more of your money into those which are creating a positive difference.
@Sapphire – I think we’re getting off topic. She is your sister, and I get that you love the way she is and wouldn’t change her. I would like a cure for autism, but that doesn’t mean I would want it to be mandatory for everyone or anything like that. If one day a miraculous cure was to come about and your family didn’t want that for your sister, that’s your family’s decision. However, many people would also feel that a cure would help an autistic person to substantially improve their quality of life. I’m just saying that’s not wrong either.
@Kittyluve@xanga – Normalcy is superficial. As a society, majority rules. Although it is necessary, society’s mold of normal leaves no room for the unknown. Within the autistic community, autism is normal; whether you accept it or not, is on you. I’m not ignoring society’s mold of normal, I’m just stating that my interpertation of normal includes autism and my sister, the way she is because guess what; she and autism have shaped who I am as an individual and affect me in everyway. Yeah, she may not reach the degree of independence necessary to function in the world without much difficulty but that’s why she has me and our family. We’re a team. She’s my sister, regardless of the autism and all that comes along with it, at the end of the day, everyday, she is my sister.
@Sapphire – To me, normal is a brain without abnormalities or dysfunctions. But in other terms, it also means being able to live in society and partake in its activities with a good degree of independence and without too much difficulty. You are insinuating that normalcy is superficial and unnecessary because as a society we shape what normal means. Even if it is a societal thing, it has shaped who we are as individuals and affects us in everyway, ignoring that fact is foolish.
@Kittyluve@xanga – I not only, emotionally benefited from her, my family did. I guess it all depends on your perspective. My question to you is who defines normal; who defines this normal you keep bringing up? Another thing for you to think about, you and I see suffering and pain. I’m sure you saw the hardships your parents went through and that it affected you deeply, whether you realize it or not. Your brother and my sister will always have a sense of innocence that many “normal” people lack.
@Sapphire – Well just because you emotionally benefited from her doesn’t mean that she doesn’t deserve a normal life. Who knows, maybe she would be happier as a normal person or maybe she would be happier as the way she is now. But the point is, you really don’t know that answer. Doesn’t everyone deserve a chance at a normal life? Bipolar disorder, schizophrenia, and autism are not physical diseases but they are mental conditions that are caused by an improperly functioning brain. Furthermore, schizophrenia can develop anytime during a person’s life. A person can be completely normal for the first 20 years of their life and suddenly the schizophrenic symptoms will appear. How is that fair and okay? Their life was completely taken away from them because of that. Ya there’s medicines but scientists still do not understand what causes these mental disorders. Because of this, medicines are often times ineffective for many, many individuals.
I sympathize with you as a sibling of someone on the spectrum but personally, I don’t believe in a “cure”. Autism is not a disease. It’s more like bipolar disorder or schizophrenia. There are no cures for these disorders but there are medicines and treatments that can help a person function more in a typical society. As a sibling, I understand the dislike for autism but I do not, by any means, hate it. My sister was diagnosed when I was 11; I’m now going on 19 and she just turned 10. She has autism (low functioning), ADHD, a touch of OCD, a speech impairment, and mild mental retardation. I understand life is going to be difficult for her and there will be many tough decisions to make in the future regarding her, but I wouldn’t wish for her to change or for her to be “cured”. I am so much of who I am because of her; meltdowns and all. I understand the pain you feel because he seems hopeless but sometimes (okay, most of the time) you have to look at the positive and relive happier moments and milestones he’s reached rather than all he can’t do and all he’s missing out on. Truthfully, at times, I feel like the only girl in my family because realistically I’ll be the one getting married one day and starting a family while she’ll pretty much always be a child, at least mentally. It hurts and if I dwell on it I start to feel hopeless but then I think about who defines “normal”. Who defines what a typical life is SUPPOSED to be like? Truthfully, only you can. So yeah, by society’s standards my sister isn’t normal but she’s my normal, she’s my typical, every day person and I wouldn’t want to change that. She’s humbled me. You said “don’t pretend that autism is a blessing”; I know my sister is a blessing and the autism just came with the package. I don’t like to think about the person I could be or would be if my sister wasn’t all of who and what she is. Because of her I’m a more open minded, patient, compassionate, responsible, well rounded, and driven person. Because of her I know what I want to do with my future.
I can certainly sympathize with the sentiment here. My brother was very lucky– he is high functioning. I have worked with other autistic children and my brother was a piece of cake compared to them.
I think people’s idea of “autism” is skewed, like you said. Not everyone has “savant” characteristics and often times children that are just “odd” or extremely shy get diagnosed. Did you know that some kids with other disorders like Down’s Syndrome also get diagnosed with autism as well? The reason is because autism is behavioral and without a known cause.
That is why when the new DSM comes out they are going to redefine the diagnostic characteristics for autism. (Comes out in 2013!)
@shesmorethananumber – It’s a good thing your mom was in tune with your abilities! Because you certainly don’t seem to fit into the traditional area of autism. I’m not sure if a cure for adults is a good idea. Even if adults were given a cure, would they be much different? I’m saying this because adult brains do not go through much neurological development. I believe it’s essential to deliver the cure at a young age so that some neurological development can happen.
@Lisa – @Twyla – Wow, thank you so much. I am 23 years old though. I hope that’s not disappointing. My post was about how things were in the past. Today, my brother is an adult himself. He’s almost 21 years old. Luckily for us he was potty trained right before he went to the special home. He’s less hyper and listens to requests better. He has learned several words, mostly of things that he likes and repeats those words if he wants them. But his outward communication is still extremely limited beyond repeating those words. But he still doesn’t show affection. However, we are grateful for the modest improvements that has come with age.
@keystspf@xanga – So true. There are so many things that we do not understand about autism. It still is basically a mystery.
I can’t help but kinda see autism like the mutants on X-Men… some people on the spectrum are effected in ways that make them stronger, more capable people, because of and in spite of the difficulties they face, like Wolverine or Storm… others like Rogue, face isolation of the worst kind. Others cope well enough with help, like the guy with the laser eyes and his special glasses. (I can’t remember all of their names.)
Personally, I understand why someone would want to cure their child who was completely trapped in their own little world… but at the same time, I am incredibly curious about what goes on in their heads. I would love to see what is in there that holds them captive inside their own minds. Is it a disconnect between mind and body? I don’t know.
In my own case, I wouldn’t trade the positive things I have that are rooted in autism to rid myself of the negatives. Sure, the sensory issues can be distracting at best and sheer torture at worse, but rather than eliminating them, I’d rather learn to channel them. The first step has been to accept them as abilities rather than disabilities. I CAN hear frequencies other people can’t… what can I do with that? I CAN feel minute changes in air pressure and temperature… what can I do with that? See what I mean? How can I use these (and other) abilities to benefit me? What can I do to counter them when I need to not be distracted by them?
Perhaps those of us on the more outward directed end of the spectrum can be beneficial somehow to those on the more inward directed end? Those of us who can articulate what we hear, see, feel, think, etc. maybe we hold some of the keys for unlocking the potential of people who are trapped inside themselves?
This is a wonderful article — so vividly descriptive. You have described these issues better than many adults can describe them! I often wonder what this generation of siblings of those with autism will bring to the table (so to speak) as adults — what perspectives and knowledge siblings will contribute. I imagine some siblings may prefer not to focus on autism, but some may become professionals, such as doctors or scientists, with a deep perspective and motivation regarding autism.
My teenage son with autism has a significant level of impairment, and I believe in the importance of biomedical treatments. I don’t think that these treatments are in any way disrespectful to the individual on the spectrum. Yet I am very interested in reading the perspectives of people with HFA/Asbergers on everything from sensory issues to social issues and more. I applaud you for stating so clearly that each individual should be able to describe experiences without insulting others who are at different places on the spectrum, and without feeling insulted that someone else’s experience of autism is different. I don’t understand the level of conflict; autism is diverse — why should that be an issue of controversy?
Although my son has a significant mental imparment (partly because he has a genetic syndrome in addition to autism) he is very happy and affectionate. His behavior is good. He communicates well enough to express basic needs and interests, and his language is continuing to develop even though he is a teenager. For him, a turning point came when he was about 10 years old and we placed him on a diet free of gluten, casein, soy, and corn. Casein is the protein found in milk, and gluten is the protein found in grains such as wheat, barley, rye, and some oats. At that time we also started giving him digestive enzymes from Houston Nutraceuticals and probiotics. These treatments enabled him to finally get toilet trained, after years of chronic diarrhea and enuresis. We also started him on various nutritional supplements from Kirkman.
Needless to say, there is no telling whether any of these treatments would help your brother. But if your family is interested, a good book to read is “Unraveling the Mystery of Autism and PDD” by Karen Seroussi.
When my son was younger, he only wanted to eat graham crackers and yogurt! We commented that he was like a drug addict. I was unsure whether he could transition to the GFCF diet. But once the change was made, it wasn’t so hard. He adjusted. And there are lots of resources now for recipes, advice, and GFCF products.
I only mention this because it is something I wish we had known about sooner. I think it is unfortunate when I often hear in the news of a person with autism and major behaviroal/communication issues who eats pizza every day. So many people report improvement in communication and behavior with the GFCF diet.
It’s quite possible your family is already aware of these interventions, but just want to mention them in case it’s helpful.
My heart goes out to you and your family for all that you have been through, and I wish you all the very best!
Just blogged about this post on About.com: http://autism.about.com/b/2010/07/25/which-autism-are-we-discussing-today.htm. Nice job!
Lisa Rudy
I am an individual with Asperger’s and am not offended. I would agree with a cure for others who want it if it was safe and proven. I work with a kid much like your brother. Maybe his family would decide they want to cure him; I would support them. (as long as it was safe)
I personally wouldn’t take a cure, but I understand not everybody feels that way.
I usually say “autism” to refer to the entire spectrum; btw; because I was not even close to Asperger’s criteria in preschool; if my mom had allowed it, I would have been “traditional” autism.
@Lex – Really? I actually read from my biopsych book 1 out of 10. Hmm.
@P1AutismMom – Yes that view seems to be rampant on xanga.
I love when people use selective quotes ala Temle Grandin, a very high functioning and celebrated autistic individual. It’s almost as if we are to believe that every autistic child has the potential to accomplish what she has whether they are high or low functioning.
Yet even Ms Grandin herself acknowledges that not everyone is enjoying a good quality of life.
“Children between the ages of five to ten years are even more variable.
They are going to vary from very high functioning, capable of doing
normal school work, to nonverbal who have all kinds of neurological
problems”
less than 1 percent of autistic people are savants. what are u talking about?