Monday, February 4, 2008

Maybe He Doesn't Want To Be "Cured"

I was doing different google searches today on autism. I was looking up "cures for autism". I love Wolfe the way he is but sometimes feel like other people don't think I do enough to "cure" him and so I was curious to see what I need to do to "cure" him. I came across this page in my search and found it very interesting.


A cure for autism?
Sometimes I feel angry when I read about attempts being made to 'cure' autism.
I do not wish to be 'cured' from my autism, and many autistic persons who are able to communicate their feelings, say the same thing.
Autism is not something that I have, it is something that I am. Autism is in every emotion I experience, in every thought I think. Autism is throughout my philosophy, my political beliefs, my religious convictions. Autism affects my choice of job, my taste in clothes, my favourite music and literature, the artforms I like, and those I dislike. I am autistic in my views on humanity, my opinion of individual persons, Everything!
Autism is not a cage, with us as the prisoners. You cannot talk about a person 'emerging' from autism.
If it were possible to remove autism from a person, you would get a different person. A person who, perhaps, fits in better with his surroundings. Maybe a person who abides by the rules of society more. A person who does not stick out. That person will look identical to the previous one, but will be a different person nonetheless.
Another autistic person said that when people talk about curing an autistic person, what they are actually saying is that they wish that instead of this person, there was someone else who is more 'normal'. Naturally that is not a nice thing to hear if you are the person they're talking about.
I'm not against medications which will alleviate some of the symptoms or problems of autism. For example, if there were something which would filter out the 'noise' of a crowded room and let us concentrate on one conversation, that would be very useful. If there were something that would help autistic people make eye contact (some autistics find this impossible), that too would help.
However anything that would alter my mind is so abhorrent an idea that I view it in the same light as homicide. I even find hypnosis horrifying. The idea of anyone else taking control of my mind and manipulating it is unthinkable.
I know that when people talk about curing autism they mean well, but they really don't know what they are talking about. Please keep any such cure away from me. Star Trek fans will understand what I mean when I say I don't want to be assimilated into the collective.



I really enjoyed that because I do have a hard time medicating him when he can not speak to tell me whether or not he hates that medication or putting him through therapies that I have no idea are working or the very worst is sending him off with a therapist that I have no idea if they are being nice to him or abusing him (I do have a geat therapist right now but I have had awful ones in the past). I know that the only improvement I need to see in him is just him being happy (and learning how to communicate) and just because I want to see him get married and have babies doesn't mean that he wants to get married and have babies. So now I know what to say to people when they tell me what I need to do to "cure" him (which happens ALL THE TIME**) is just to say "maybe he doesn't want to be "cured".

**Sorry to anyone who has tried to tell people how to cure their child's autism. I do understand that you are trying to be helpful and I appreciate that people think of me and Wolfie and want to help but there is a large majority of mom's of autistic kids that are uncomfortable when people push their kooky ways to cure it on us. I do know that it is just with good intentions and people feel like why not try everything possible. It is because I don't want to put my child through uncomfortable situations that I have not tried everything. Thank you to everyone who has cared, I didn't post this because I am mad, only because I found it interesting and I agreed.

16 comments:

Cristin said...

That is very enlightening! Though, I don't have a child with autism, and can't relate, I do relate to having a child that is "different" and all my dreams of what his life would be have changed. He's a lucky kid to have a mom care enough to let him be who he is.

ajesplin said...

Yeah, I don’t know if I would use the word “cute” to describe that, but I definitely get your point--it certainly makes me think. My kids may not be autistic, but I’m constantly trying to “cure” them of all kinds of things--maybe I should just accept them for who they are.

I can’t even pretend to understand the difficult decisions you’re forced to make with Wolfe, never knowing how he really feels about it. It sounds very scary, and I don’t think I could handle that. Sometimes you make it look easy to raise an autistic child, your brave front fooling everyone into thinking they could do it too.

I agree that society should accept people with autism just the way they are, and I think society’s view and understanding of autism is constantly changing, so there is hope for the future. But I have to say, I think advice on how to alleviate some of the symptoms or problems with autism is often mistaken for advice on how to “cure” autism. Like the author of that piece wrote, he wouldn’t mind help filtering noise or making eye contact. That said, I’m sure it’s frustrating to constantly hear advice like, “this worked for my neighbor’s cousin’s son,” because it implies you could fix Wolfe’s autism if you would just be willing to try. This has nothing to do with a person not being able to accept a child’s autism, it has to do with that person wanting to jump in and save the day by coming up with that one kooky thing that will make a difference. We both know that I, along with every other person in our family, have been guilty of this. In reality, we know that you are Wolfe’s number one advocate, his best interpreter, love him more than anyone could possibly be capable of, and that only you could know what’s best for him. We are all very proud of you.

PS I couldn’t help but notice that the autistic person who wrote that piece was able to communicate his feelings very eloquently. It annoys me to compare his feelings about his autism to how Wolfe might feel. It would be like me speaking on behalf of the blind, since I have pretty thick glasses.

Wolfegang said...

I like raamen noodles!

Sara said...

I need to specify that I don't mind advice for therapy or when someone tells me something new available to him, I just feel uncomfortable when people tell me if I take my child swimming with whales he will be cured and then they won't drop it when I am not interested. Also I want to point out that someone can be classicly autistic and be very intellegent and able to express their feelings very well. And thank you for your nice words. I appreciate it.

ajesplin said...

I just wanted to point out that legally, I’m considered classically blind, though I don’t pretend to know what it’s like to be Mary Ingels. I can drive a horse-drawn wagon, get a job at the mercantile, save my baby from a house fire... she can't.

Amy Thurston said...

Just remember if you are trapped under a car, in the middle of a dry field, with Jenny, keep her glasses away from the suns rays. Unless you need a fire to start so that someone could come and save you and your pregnant friend, who probably just went into labor.

I like Wolfe just the way he is too, but you might want to try this special concoction I have heard of. It is just a simple mixture of egg whites, tabasco sauce, and lambs blood. It is suppose to cure kids of their obsession to eating ramen noodles

Shed said...

I'd love to meet Wolfe someday. I promise I won't cure him of anything.

abutler said...

I hope I'm never one of those people who say stupid things to parents about there kids. Am I? If I am I guess I needed to read that. You're a great Mom and I like Wolfe the way he is too.

sarastrasser said...

Oh I will try that one, Amy. It sounds legit.

Emily said...

You (and Morgan) are amazing parents and are doing such a great job with Wolfie. He is very lucky to have you as parents!

Erin Beck said...

Oh Sara.. I dont even know what to say...as a parent I agree but as a student going into that field (inspired by you two by the way) I have mixed emotions. You love your child no matter what he or she is and I agree, I love mine, as annoyiny or obnoxious as they may be, they all have their disabilities, one way or another right?? Wolfe may not talk but you know what..? Frances talks to much. Is there a cure..? I dont think so. Sometimes I would like there to be and sometimes not. Thats who she is and it can certainly get on my nerves at times but I will always love her for who she is. One thing I have learned is that no matter what , no child is perfect. They all have their "disabilities" one way or another but you love them no matter what for who they are and you almost want them to stay that way because thats who you know and love. But one thing for you to keep in mind whithout offending you hopefully,is that people who want to help them and give you advice do it becauese they love you and your child, or their child and care. Thats why I am going to school to do what I am doing. I am not looking for a cure, I am just trying to make both your lives easier and more independent. I do think it is possible because I have seen it first hand from students as savierve as Wolfe and they are in college and they are doing great! I talk with these kids everyday and I think of Wolfe and I am so impressed and I am excited for the work that I hope to do and I know if it were not for these teachers along with loving and supportive parents it would not be possible. I cant even imagine what it would be like to have a child like wolfe on one hand but one the other hand I truely believe it would be a blessing but I know it takes a certain person to have a child like that. I envy you! You are special..more than then rest of the Morgan children. You were blessed with him and only you could handle it and I see and know it by the way you are. You are patient and loving. Want I want to do is make it easier for you and other parents like you because I do care and I love you and your family. Stop giving me griefe (did I spell that right??..griefe?) About my blog. Like I said, I gots notjin to say!!

Erin Beck said...

dont be hatin sara... love you. Im at school noe cuz my laptop and desktop decided to crash on me the same week!! They be hatin, not me!

Katie or Tom said...

I hope that any advice i give isn't offensive. I think you have done a great job with Wolfe. I think as long as he is happy and thriving you are doing all of the right things, but my sister Julie's little boy seems...I don't know...overwhelmed. he is really frustrated and aggressive. I think he would like help so he can feel calm. I love my nephews. I only want the best for them. I don't think that having the eyes and ears of all those who love him open to new advances and ideas is such a bad thing. I also believe that i could be wrong. i am on the other end, and I don't have to hear everyones medical theory on what is going to cure them. I think autism carries very special attributes that no one would ever want to destroy by curing someone, but i aslo think something that might really make Wolfe or Jacob or Calvin happier could be missed if you automatically put up a wall to any "help with autism". I hope you know how much I love you and Wolfe. I only want the best for you. TIK

Katie or Tom said...

I love ramen noodles too! TIK

Katie or Tom said...

Oh, and Calvin Gibbens not Calvin Thurston. Just in case you didn't know that was my nephew's name

Katie or Tom said...

TIT-what the hell are you guys talking about?