I believe that autistic children come to us with 2 purposes. The 1st is to challenge us to the core of our being to examine and surrender all that is not really, truly important, the 2nd is to teach absolute unconditional love, and by that I mean
unconditional.
A child with autism is hardwired not to conform to our ideas, beliefs and expectations as to how someone should behave to fit into their culture and society. A lot of the tension they feel and express that can make us so uncomfortable however, is the result of moving in a world that is constantly judging their "inappropriate behavior". That behavior may be causing no harm at all, but because society finds it inappropriate, if it goes against social norms (for example repetitive body movements, strange sounds or even honestly expressed opinions) it can be very difficult to socialize with ASD children. (or adults).
We can tend to see the only solution to the discomfort around socializing with Autistic children, to be to somehow miraculously get them to conform so that we can all feel more comfortable. But I am going to make a very radical suggestion, that perhaps it is not the ASD person who needs to change their behavior. Perhaps their discomfort in this world is partly because the rules that govern our social behavior have become so narrow. Perhaps our values around social behavior need to alter to encompass the phenomenon that autism is becoming.
There is a lot of focus in the ASD world on curing this condition. I've started this blog, partly to express an alternative point of view. I found in my situation that in my struggle to get my son to conform, a slow recognition emerged that unconditional love of my son, as he is, where he is now, letting go of all concerns for the future and being present in this moment with him, was the most important thing required of me. By doing this, I have seen miracles happen, with his speech and social behaviour. (I never thought my son would greet people and say "hello" and "goodbye" and "thankyou" and even shake hands, all of which he does now with a real genuineness). But the first miracle, and most important miracle is the one that happens when we let go of the tension and allow ourselves to relax with whatever situation we are faced with. The first and most important lesson I learned was that my son needed me to love him and accept him as he was, not as I or others wanted him to be. But equally important for our healing was for me to love and accept myself.
My question is: do we need to cure autism? Or are they here to cure us?? Perhaps the answer is a combination of looking within, going with the transformations that autism asks of us, surrendering to the lessons it has to teach us, and looking for the solutions that are physically and behaviorally based.
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Comments (12)
Wow you write it so eloquently.
I have felt the same things many times.You may be on to something wonderful here.Brad (father of Sam)I guess the view of whether autism is something we need to "cure" or not is deeply rooted in what we are faced with and more importantly what our children face every day. Not all of the unfortunate symptoms of autism can be conquered through social awareness and acceptance by parents or society as a whole. There are many children who struggle through more than just the mild characteristics of self-stimulitory behavior or a social awkwardness.
There is the physical trauma of suffering multiple seizures, a painful physical overeaction to stimuli causing self-injurous behavior and unfortunately these individuals will always have to rely on others to provide for their most basic of needs and to provide for their safety, from being able to cross the street safely to having their diaper changed.. Unfortunately as parents and caregivers we will not always be here for them so it would be negligent of us not to try to work through the challenges rather than accept what is for what should be.
I do not believe that parents who's children are on the lower end of the spectrum worry a whole lot about their child's hand flapping or verbal tics because they have bigger and more daunting issues they are facing. Living in the moment is not just uncomfortable but painful in many cases. We accept our children and love them no less and that is why we strive to find a remedy for what should be deemed as unacceptable for any child to suffer through. It is our duty as parents not to leave our children ill equipped and unprepared whenther they be "typical" or on the spectrum.
@P1AutismMom - I agree with both of you to a degree...
I don't know how to phrase what I want to say though. Please forgive me if this sounds a little off, the words I have available are not quite fitting. There seems to need to be a difference between kids with Autism who are so far into the spectrum that they will not likely ever be able to care for themselves, and kids who are capable, but definitely different than "NT" people.
A child who is like the one I recently read about who at three years old was banging his head into the wall and knocking himself out or "head-butting" his mother and knocking her out and is completely non-verbal is very different than the three year old who flaps, does the whole echolalia thing, has taught himself to read, and does crazy math problems in his head.
They both need help to live in the "real world"... but the first one needs a totally different kind of help.
@keystspf@xanga - I agree and how you responded to my comment shows that my point was not mistated. Your words are completely understandable and this would even help to illustrate my point further.
I think that unconditional love for an individual who has autism, down syndrome, paralysis or other condition and acceptance of these conditions as a whole are two entirely different subjects. Searching for a cure is not a sign that someone does not love their child and I would say quite the opposite, it is because they love their children so deeply that they search for remedies or answers.
I guess when I see the words phrased "to love him and accept him as he was, not as I or others wanted him to be" I ask myself, Who does that? Who loves their children only if they live up to other peoples standards and expectations? I do not blur the two together so maybe when I see this I get a little confused.
@P1AutismMom - They are two different things... but too often they get tangled together. This is especially difficult when it comes to Autism since kids who have it don't always look different than anyone else. It is easy to love and accept someone in a wheel chair or who has the obvious facial features of someone with Downs Syndrome. It's "easy" to accept those as conditions that will not go away.
I have NEVER heard anyone talk about trying to cure Downs the way they do Autism. I've heard a bit about prevention, but nothing about looking for a cure. What I've heard about prevention is scary, because now they can offer tests to screen unborn children for it and the parents are given the option (or even encouraged) to abort the pregnancy. Heaven help us if they find a way to "prevent" Autism the same way, especially if there's no way to predict the severity.
I can understand the desire of a parent with a child who is severely autistic to find a cure... but how is that child any different than one with any other disability that people DON'T try to cure? A child with Downs Syndrome has a whole lot of help to become a functional member of society, even if they continue to need assistance for their entire life... without someone constantly trying to cure them. Nobody has tried to "cure" my friend's neice who has Downs. They've accepted that she is different and will remain different her entire life. She is six years old now. She is pretty much non-verbal, uses a few words and has learned some sign language. I don't know a whole lot more about her, but she does pretty much everything else a normal six year old gets to do, including going to school, playing dress-up, etc. I don't know if she is potty trained or not.
Why is it that Autism is not accepted that way? Why are the expectations so much different? Does the physical appearance of a person with Downs have something to do with it? I've seen kids with Downs have the same kinds of meltdowns as an Autistic kid... nobody reacted with the "bad parent" thing that I've read about so often.
That is the kind of acceptance that people should have for Autism. If they can accept the oddities of Downs, why not Autism? I know they are two different things, but they have some similarities. I've met and seen some very high functioning people with Downs, but I've also met some who have it so bad that they are drooling in wheelchairs. I've seen the same kind of spectrum with Autism... difference?
@keystspf@xanga - This is true that downs has a look to it that will evoke feelings of sympathy beyond what you would naturally receive with a child who has autism, my son included. Down syndrome does come with a host of physical abnormalities which cause physical symptoms and from what I know, which is minimal there are issues with the heart as well, some minor but others very serious so I would say that these were symptoms a parent would want to acquire a cure for.
Abortion is not a cure but actually a way out for some who would rather not be dealing with anything out of the norm and I thuroughly believe this is wrong. This is why I do not support genetic research for autism because that is where they are headed in that line of study.
I think what I most have a problem with is that acceptance has turned into an escuse for some not to address concerns of behavioral issues. There are limits to what we should allow as acceptable vs atypical ways of dealing with the environment. We still need to teach some socially exceptable behavior such as becoming aware of others around you and not touching them innappropriately. To just throw our hands up in the air and expect society as a whole to accept without even attempting to address even the most basic of behaviors would cause our children to be further ostracized and judged before anyone got the chance to know them. We can't keep using the diagnosis and political correctness to merely dismiss our responsibility to teach our children proper conduct involving personal space.
I used to wish that Daniel had a outward physical abnormality that screamed autism to the general public but all you need to do is spend 2 minutes around him to be able to figure it out. We have largely been accepted by strangers without feeling critisized and I'd like to believe that it is in part to the efforts we have put forth in teaching Daniel how to regulate some behaviors to the degree that he can. Again, I am not talking about hand flapping or reciting the dialogue of a cartoon character in class but rather things like touching a womans breast or behind our of curiosity. I refuse to short change his ability to understand that there are things you should not feel free to do just because you have a different perception of the world.
If someone with high functioning autism is happy with their life that is wonderful and their is no need for a cure but to persist with the train of thought that looking for a cure is evidence of being an unloving or unnaccepting parent, well that is just wrong.
@P1AutismMom - Right... we agree more than disagree. Heart issues, now that you brought it up, is one of the things that Gracie had surgery for. (I forgot about that.)
Teaching an autistic child social skills and socially acceptable behavior is not the same as trying to cure him. EVERY child needs to learn those things, autistic or not.
My little brother had this fetish with goosing people when he was about five or six years old. He would go around and pinch people on the butt at random. This persisted for quite a while, in spite of repeated attempts to get him to stop. Needless to say, this is not acceptable behavior in a five or six year old. My brother was never diagnosed with autism, though it was suggested as possible when he was two or three years old and did not talk... the matter was dropped when he finally started talking. I doubt my mom would have tolerated his goosing behavior even if he had been diagnosed. He used to get into all sorts of trouble for it... but that didn't stop it. Finally, somewhere along the line I guess someone embarrassed him enough and he stopped.
There's a difference between accepting the condition, and accepting the behavior. It may take longer. It may take a different approach. It may take something "drastic" to teach an autistic kid socialy acceptable behavior. But at the same time, it is the behavior that needs to change, not the child himself. I guess that's what I'm getting at more than anything.
I guess too what I'm trying to get at is that if we, as parents, accept and love our kids no matter what... we're willing to work within the boundaries of whatever conditions they have to make their lives as good as we possibly can. Thing is, you can't work within the boundaries of a condition that you're not willing to accept. (Forgive me for using "you" here... it is just the easiest way to phrase what I'm trying to say, not anything personal.) Does that make sense?
I'm not saying that to search for a cure means a lack of love, quite the opposite. Though I am definitely with you on the genetic thing...
What I'm saying is that along with hoping for a cure, we SHOULD do what you're doing and work with our autistic kids to teach them socially acceptable behavior, coping techniques that allow them to be part of society, and anything else we possibly can to help them have the best possible lives.
@keystspf@xanga - You are right and I feel we do agree with each other on pretty much everything.
Your poor mother, she must have had a lot of explaining to do. We had this happen once in a store but the woman was bent over and seemed to be presenting so.... LOL
That is so funny that you pointed out the use of the pronoun "you" in your response. I find myself editing posts many times over because for some reason the use of "you" seens odd or maybe even accusatory. I'm glad to find that I am not the only one who has this grammatcal issue. :)
@P1AutismMom - It is simply easier to write in the second person sometimes... In this particular case, I wanted to exclude myself since I already do that. I already accept and work within the boundaries I'm presented with... so the phrase wasn't applicable to me. Prior to that I'd been writing in the second person inclusive, using "we". So, staying within the second person for the sake of continuity only makes sense... switching to the third person to say, "They can't..." sounds unnatural... even if the phrase doesn't apply to EITHER of us. LOL
Words are such tricky little things. I like playing with them... but they often disert me when it comes to speaking... I quote a lot. It is easier. I quote what I've written. I quote what I've read. I quote what I've heard. I almost never say anything "original." On the rare occasions I do, it usually ends up sounding rather like Yoda.
@keystspf@xanga - Well, we have never spoken face to face but I thuroughly enjoy your writing and look forward to more in the future.
BTW Yoda is Cool
LOL
My 13 year old son has an Autistic Disorder diagnosis and he is assessed with profound developmental delays. It is clear he will not live an independent life. If he is fortunate when we can no longer care for him and when we are deceased he will live his life in a facility with compassionate caregivers and decent living conditions.
I love my son and enjoy my time with him but I do not believe that my son is here for the purpose of making me a better person or to teach me. I do not believe that his lifetime of challenges is done with some divine intent to make me a better person. If believing that makes you or someone else feel better about your child's situation fine.
If a cure were developed for my severely autistic son that allowed him to develop more fully and live a more complete and independent life I would want him to have that cure. I refuse to hide his reality behind feel good sentiments.
Harold Doherty
Facing Autism in New Brunswick
Hi,
I have a 16 year old son with autism. He is the most beautiful and happy soul you could hope to know. He delights everyone he meets with his loving and happy disposition. I feel utterly blessed to have my son just as he is. But that is MY son and MY experience. I don't presume to suggest other parents of autistic children have the same experiences. Each and every child (whether they be 'normal' or have some form of disability) will have great range of joys and challenges for their parents.
We give our son all the help and opportunities that we are able to, to help with his development. We have faith that he will be ok, even after we are no longer around to care for him. We love and accept him as he is, and have had various treatments to support his nutritional health for his well-being.
We DO believe that although there may not be a 'cure' good nutritional support is vitally important to give kids with intellectual disabilities the best chances of doing well.
I don't really subscribe to the notions that some put forward that our disabled kids have a special purpose for our development etc etc. Things are as they are. Its up to us to manage and do the best we can with the 'cards we are dealt'. ACCEPTANCE is the one thing that we need to cultivate as parents.
Blessings to you all!
Ash.