My “other daughter” has become a very invested, loving parent not only to her own biological children but to 2 step-sons as well. This is her wonderful opinion piece and I hope you will give it a read. I dare you to walk away without getting it in the ‘feels.’ Please do share, and share again…..
Autism: 4 Reasons Why I will Never Accept the Statement “I hope they don’t find a cure for autism” by Alyssa Anderson
I was sitting in Phase I training soaking in all of the knowledge I could in order to help my step-son who has autism advance in learning. I understood that his autism was something that made it hard for us to communicate. Sometimes we speak the same language, and sometimes we don’t. Sometimes he would understand what I meant when I said, “I’m going to get some milk.” He knew I meant “Alyssa is going to get some milk.” Other times, I could say that exact same sentence, “I am going to get some milk”, and this time his response is “Ah! I don’t want any milk!” Yes, those pronouns are sometimes tricky. He processed it as “Colton is going to get some milk.”
Yes, I was there sitting in training hoping I was determined as Temple Grandin’s mom. I wanted to learn his specific language. I wanted to break that language barrier. I wanted to break that barrier so we could talk and learn things from one another about things way bigger than who wants milk. I wanted to help him count money. I wanted him to understand what rent was. I was soaking in this information like a sponge, and then I heard something that made me angry. Instantly I realized that I didn’t understand why this person said what she did and what she said made me so mad.
This “autism specialist”, our team leader, was explaining that her son had aspurgers. It was wonderful hearing her talk about his quarks and about how much she loved him. Then she said something that had me seeing red (a metaphor Colton wouldn’t quite understand). She said, “I hope they never find a cure for Autism. Actually, the world would be a lot better place if everyone had Autism.” That statement was made to me about 8 months ago.
I understand very well that my thinking and opinion is often in the minority, therefore I said nothing. Often, I have to research the opposing opinion and sometimes I realize I’m in the wrong. So, over the next few months, I combed through the comments on news blogs and social media posts with titles like, “Mother of Child With Autism determined to ‘Kick Autisms Butt”‘. Once again, I found that I was holding the minority opinion. Comments similar to “how dare you try to change your child, he is who he is and you not accepting that means you don’t love him” riddled the comments. Out of hundreds of comments, maybe ten said “good job, momma”. Out of thousands of reactions, there were few “likes” or “loves” and plenty of “angry” and “wow”. Yes, wow can be on the fence, I understand. Moving forward, I had to ask myself as I often do when my opinion differs: Why? Why do I still feel like I would want a cure? Why am I not convinced? I agreed with their statements like “My son isn’t any less of a person because of his autism”, but I didn’t agree with people ridiculing other parents dealing with autism as trying to “beat it” or advancing their children’s learning to hopefully one day function in society like Temple Grandin. She is an amazing person whose mother never gave up on her. In fact, just like stated earlier, I wanted to have her mother’s determination. Temple’s mom is a hero! That was one determined momma. (If you don’t know the story, look it up. It’s not fiction. If you don’t want to read about it, there is a movie. Watch the movie and the bonus features. You will see Temple herself, and you will most likely cry.)
I thought long and hard, trying to understand the popular opinion. After a considerable amount of time thinking about my opinion and why I felt that way, at 3 am this morning (yes this thought has been plaguing me enough to keep me awake sometimes) I zeroed in on 4 main reasons why I can not accept the statement, “I hope they don’t find a cure for Autism.”
– 4 REASONS WHY I DISAGREE
Before I start my list of reasons, I want you, as the reader, to understand a little about Colton. He is somewhere between “low functioning” and “aspurgers”. He babbles, but he can speak English. Forming complete sentences in normal conversation isn’t always something he does IF you can get him to hold a conversation in the first place. His favorite word is “no”, and he’s doing this new thing, “Shush! I am the great shusher” when you say something he disagrees with like “eat your vegetables”. He flaps his hands, gets frustrated easily, jumps around, and he does this high-pitched, loud squealing thing and squawking thing when he’s excited watching his movies or playing games like “you’re a dirty old man” with his dad. He is a joker, a prankster, has a wonderful love for his brother, he is exemplary at art, he loves animals, and he draws funny cartoons. One time, he drew me with wings flying in the air, and my arms were open wide, welcoming the children floating around me that were all in the fetal position. He kept saying about the picture “She’s going to love us. That Alyssa is going to love us!” Oh, he is one sweet boy. Do not doubt my love for him because he certainly doesn’t. So here are the reasons why I couldn’t agree with our “team leader”.
REASON 1: COLTON
It is hard watching this wonderful, beautiful child cope with his condition. He is frustrated. He may not fully understand autism. He may not fully understand why he feels like he’s different than the majority of people, but he does understand that he IS different. He sees people communicating with one another with ease. He will watch (while looking away. He watches with his ears by putting one close to the conversation with his head slightly turned toward you) in bewilderment as I have a conversation with his dad. It’s so easy for us. I imagine it’s like sitting in a room full of people speaking Spanish while I only speak a little and can’t keep up with deciphering the words. He knows he can’t do that, and it frustrates him. How do I know? Well, no one talks to him here saying he’s different. We try to assimilate and treat him just like we would the other kids in our family. We don’t tell him, “you have autism”. Despite that, he makes statements like “My brain is sick” and “I don’t want friends” (obviously just trying to avoid having to confront his frustration at communication). He has even asked me, “Why do I have to be a human anyway? Why can’t I be a dinosaur? Being a human is stupid. Humans are stupid.” No, I’m not projecting. Sometimes he hurts because of his autism. He doesn’t speak everything on his mind. In fact most of his speaking is trivial and impossible like asking dad to make him a time machine so he can go back in time or asking me to make a DNA splicer since he knows I like Science. Him saying these deeper things are real to him. To him, they are not a joke or a fantasy. He sees the difference, and he doesn’t like it. No one pointed it out to him. Why wouldn’t a parent want for their child exactly what the child wants for his/her own self, especially regarding the struggle with mental health? Could you imagine him asking me to take it away and instead of helping if I could, I tell him “Sorry, I’d rather you have autism”? It would be wrong. I cried thinking about him being upset that “his brain is sick”, those were his words! So for Colton, that dear, loving, wonderful human being, I can not agree with the statement, “I hope they don’t find a cure for Autism.”
REASON 2: AUTISM
Autism is a significantly broad spectrum. In no way am I downplaying aspurgers, I grew up with someone who had aspurgers. It’s very hard. However, I found it very insensitive for this mother of a child who has aspurgers to say, “I hope they don’t find a cure for autism” to the mother in the back whose child bangs her head up against the wall in a fit, bites bloody chunks of flesh out of her own arms and legs (most likely out of the mother’s arms too), who is incontinent, has sleepless nights, seizures, and people, the list goes on and on! It’s hard for parents to watch that, and I assure you, this poor child doesn’t want this for herself. It is very insensitive to simply say to this mother and child, who go through this daily, “Actually, the world would be a better place if everyone had autism.” My son does none of these self-harming things, but for the sake of these parents and children who experience it daily, weekly, or even once a year, I refuse to agree with the statement, “I hope they don’t find a cure for autism.”
REASON 3: MY SON HAS AUTISM, OR MY SON IS AUTISTIC?
Oh boy, this is a conundrum. Not the first definition. No, it isn’t a hard question that has a hard-to-find answer. No, the answer is simple. In fact, it was the first thing we went over during this Phase I training. My son HAS autism. Everyone who has a child with autism can well agree with that. Autism is a mental disorder. Look up “mental disorder”, and you will see autism on the list. Just like a smart woman said at the beginning of Phase I training, we would not say a person IS ADHD, we would say they HAVE ADHD. The main and most important point of it: AUTISM DOESN’T DEFINE A PERSON. They are who they are and autism is a series of symptoms. It is so important, not just politically correct, to say this correctly as we talk about this condition. So then, why is this conundrum amusing? Put frankly, you can’t say “my child has autism” in one breath and “You don’t love your child because you want to “beat autism”. You should love them just the way they are” in another breath because the two sentiments are exactly the opposite. This is a heavy burden and a huge controversy for people with children who have autism, and people with children who don’t have autism cannot understand. Therefore, any person not directly caring for a child with autism has no right to an opinion for no cure (which I’m sure on these comment boards there were many), and their comments are null and void. Sorry. I love you all the same, but you cannot understand. So, now only thinking about the parents who have a right to an opinion and agree that they don’t want a cure, I tried to understand. Every comment section had hundreds of parents saying to other parents who would want to eradicate autism sentiments to the effect of, “how dare you want to change your child. My child is perfect, and I wouldn’t change them for anything. It’s who they are, and you need to accept that.” Ah ha. There it was. They were essentially saying, “My child IS autistic.” In their eyes, if their child didn’t have autism, their child would not be the same person. These same people, who would have another person’s head chopped off if they didn’t say “has autism” instead of “is autistic”, weren’t playing by their own rules. This is identifying autism as the person, not the disease. So I asked myself and pondered on it for a while, “Do I think Colton would be Colton if he didn’t have autism?” Yes, I do. He would still love art. He would still be hilarious and a joker. He would still do “Colton things”. Yes, he still be “Colton”, but he wouldn’t feel the frustration that comes with autism. That child mentioned earlier would still be the same child, but wouldn’t be hanging her head against the wall. It can be said of all mental disorders, “(insert any disorder here) doesn’t define who a person is.” If this is true, then how could my child possibly be a different person if there was a cure? If autism is truly a mental disorder like ADHD (once again: it is defined that way, don’t shoot the messenger), then how would you feel if a parent said, “I hope they don’t find a cure for ADHD” or “I hope they don’t find a cure for tourettes syndrome, depression, anxiety, seizures, OCD, PTSD, schizophrenia..” Ok people, once again, the list goes on. I understand autism is different for each child and it is almost impossible to “cure” because no two children with autism are the same. Even the cause varies from person to person. Getting back on track, if it’s true that the disease doesn’t define the person, then how would they be a different person if somehow someone found a “cure all”? The cure would be for the symptoms. It would not result in some new person who is nothing like your old child being born into a more-grown-than-an-infant body. A person can not say their child has autism if their thinking doesn’t line up with that sentiment. Either their child HAS autism, and it doesn’t define the child, or the child IS autistic and would not be your “real” child should there be a cure. My child HAS autism, and I want to help him in any way that he wants to be helped. This is another reason why I can not accept the statement, “I hope they don’t find a cure for autism”.
REASON 4: THIS WORLD SUCKS
If I could get Colton to understand why bad things happen to good people (yes there is a satisfying answer to that question), this would help him. However, I can’t at this point. I can’t explain to him that someday all of his loving parents who love him greatly will probably die before he does. He will have to go on to live somewhere else. Most likely in a group home. Sure, he will most likely be older, but that doesn’t make it any less unnerving that this innocent person will be at the world’s mercy. I know we all want to give ourselves reassurance that at OUR group home, everyone loves my child. At OUR group home, there are no sexual predators, and no one takes advantage of MY child. Reality: I’ve worked in homes and have seen first hand the neglect and two-faced actions of many caregivers. Not all caregivers are that way, but I assure you, every child and/or adult living in these homes will be exposed to one or more people like that. Oh, and that nice caregiver, the one who genuinely cares, (speaking from experience) will turn in abuse and neglect to the administrator and they will say something exactly like this: we have investigated your claim, and we have determined that this situation met at least MINIMAL care requirements. Yes. Minimal is just fine in their book. After all, the worker to resident ratio is way overwhelming, so how could they possibly be taken care of properly. Too many residents, not enough workers. I will not kid myself. Sure the staff will be wonderful when you’re there visiting, and the abuse and neglect will be on a smaller scale for those whose family visits often. That girl who was abused in the care facility I worked at had no one. No visitors. No family (who did exist) came to see her. She got the brunt of it the abuse, and no one helped her. I will never send Colton to a residential place, and I can only hope and pray that one of our other children steps up to the plate and takes on that large responsibility. Yes, it scares me on a deep level. What is going to happen to this wonderful child of mine who has a problem counting money and may never be able to live on his own? He’s 14 now and for the future safety and well-being of this growing human (yes he is a human, not a dinosaur as he longs to be), I cannot agree with the Statement, “I hope they don’t find a cure for autism.”
Yes, four reasons why I can not find it in myself to agree with this heart-wrenching statement. Yes, I realize I’m in the minority. Yes, I’m sure there will be more “how dare you” comments or thoughts from anyone able to read this. Yes, I understand that the world we live in isn’t able to solve his problems fully. Yes, I know his only real hope for his safety and cure for this disease that does not define him doesn’t rest in the hands of this world’s system and maybe not even Science. Perhaps someday someone will find a cure, but I’m not counting on it. I just can’t bring myself to agree with the statement, “I hope they don’t find a cure for autism”. We have to be there for those who want to help their children beat autism. So next time you see someone trying to defeat it for their child and if the thought to ridicule them crosses your mind, don’t.. Try to understand their opinion like I tried to understand theirs. I wrote this for people to try to understand. Don’t claim superior parenting by degrading their hopes for their children because “THEIR child has autism”, not “their child IS autistic”. Paraphrasing a loving mother of a child with autism, “Leave them alone. We all have a journey with autism, and this is hers.”