Tuesday, April 20, 2010

Autism...where does one stand?

I thought I'd share something that is on my mind. I came across a well written article on a blog titled "Facing Autism in New Brunswick" http://autisminnb.blogspot.com/
This father raises a thought provoking point. He says that it is politically correct now to stigmatize intellectually disabled persons on the autism spectrum. If this is true, this is not tolerable. There should be no room for stigma of any sort in this day and age. Further, he disagrees with the notion that those with severe autism have hidden talents. I must confess, that in this blog, i have stated, either explicitly or implicitly, and in my posts in other places, that if i can be successful (college student, have driver's license etc) other people can too. I think i need to clarify and revise that sentiment. I'm not living with rose-colored glasses; I don't pretend that every person on the autism spectrum is a savant, the next rain man, or a hidden genius, or the next Einstein. That being said, however, it IS true that every person on the autism spectrum does have the capacity to bring some positive contribution to those around them.

First, let me address, as i understand it, the two main "camps" of autism: those who are proud to be autistic, and see it as a neural difference rather than a real disability, and those who seek to treat autism as a serious disability that needs treatment, cures, and so on. I will say this: I am neutral in this debate; I'm on the fence, i haven't decided where i will stand. But, my question is: WHY does it have to be a battle?

I've heard it said that the only ones who want a cure are those with lower functioning autistic children, that those whose children are severely autistic and intellectually disabled. I don't know if that's necessarily true, because it implies that they are the only ones who have a struggle. Let me say this: I am "high functioning" yet I STRUGGLE.. I struggle to remember to clean up after myself. I struggle to find the strength to focus on my work. Life as a person on the autism spectrum is NOT all roses and glamor. There is real struggle involved.

However, i do see that some see their autism as positive. There are all sorts of stories of the really good artists, mathematicians, etc, etc. of those who are on the higher end of the spectrum, and sometimes of those on the lower end of the spectrum.

The real problem? The real problem is that those who speak about autism, negatively OR positively tend to generalize. Either its all good, or its all bad. Autism affects different people in different ways. For some, it may be a devastating condition that severely affects the way they live day to day life. For others with that same exact set of circumstances, it could be the path to the greatest creative mind. and, for some, its both

For me, personally, i see having an ASD as BOTH positive and negative.

I see it as positive because I have an intellect and memory that i am proud of; and being a person on the spectrum allows me to help others with this disorder, because I know what's going on in the inside, at least on some levels. It has made me who i am.

On the negative side, it is sometimes frustrating to be disorganized and sometimes socially inept. I still find social situations awkward, and I'm no stranger to misinterpretation, being misunderstood. So, there are days when i wish I was normal. That being said, by and large, I am happy the way i am. I do realize that there are parents and individuals on the spectrum who don't share that sentiment, and they have valid reasons. It is important to respect differences in opinion regarding autism, because, as i have said, autism affects different people differently.


At the bare minimum, this sentiment should apply to everybody; life is a glass of water. You can either choose to see the glass half empty, or half full. Sometimes, it's half empty, sometimes it's half full.

For those parents of children who have severe autism, and seek a cure: by all means, seek the cure. However, i am of the opinion that the best way to start is to love and accept them where they are at, and to find ways to be happy if after many attempts, they cannot progress beyond that. I'm not saying that means you should accept them that way forever, but see that autism is a part of them, because unlike cancer, AIDS, or other things I've seen autism compared to, autism affects the brain and nervous system, the parts that define individuality. Persons who have a brain injury often have radically different personalities than before their injury. Thus, if you were to cure autism, you may end up with a child with a very different personality.

(ANOTHER caveat here: when i say cure, I DO NOT mean selective termination of of pre-term babies with autism, nor do i advocate eradicating autism. Rather, i DO support those who want to seek treatments to address the behavioral dificulties that many parents with children with autism face. It's one thing to want to "cure" autism by aborting those who have it, and a very different thing to help those who have it live fuller lives through therapy.)

Try to see the good things that a child can do... even if they are low functioning. At the bare minimum..children with severe ASD can teach their parents and caregivers patience, which is always a good virtue to learn, although sometimes very frustrating .
The important thing to remember is even in strife and anguish, there is grace. Life is suffering in one way or another. It's what one DOES with that suffering that makes the difference.

7 comments:

Dana said...

Rob! It says that you have marked your poster as private... can you change that setting.

Rob S said...

Sure dana

Rob S said...

Its fixed now :) enjoy!

Stephanie Lynn Keil said...

Hi. I have HFA (autistic disorder diagnosis without intellectual disability).

I, too, am "on the fence" about all of this.

I understand where the "Neurodiverse" are coming from, really I do.

Many (most) of them are intelligent and talented and who wouldn't want to embrace that aspect of themselves?

But they would most likely still be intelligent and talented without an ASD.

I'm not sure that being a good artist or musician or mathematician has anything to do with ASD.

I say this and I am a good artist and musician with autism.

If you go to a prestigious art and/or music school how many of the people there will have a diagnosable ASD?

Not many.

To say that most talented artists and musicians and etc. have an ASD is false.

But yes, I agree: try to see all the good a child can do, even if they are low-functioning.

I have a cousin with profound LFA and it is often very difficult for him and his single mother but they get by.

Rob S said...

Hi there! Thanks for finding my blog and giving your thoughts on this. I'm glad your cousin and his mother get by; do they get respite services? If not, they should see if they can get respite.

I make no pretenses about being politically correct; i am neutral because i just don't know how i feel about all the treatments being propsoed by those seeking a cure for autism..

You raise an interesting and sailent point; that those with HFA may have been just as intelligent without being autistic. Perhaps the idea is not so much the fact that they are intelleginet or atistic, but thier perception of soical patterns and what not, how they percieve the world, what they perserverate on is radically different than a neurotypical person. In that sense, their autism makes them unique, and its more than intelligence. That part should be left intact; what in some cases needs to be changed or altered is the behaviral difficulties and lack of ADL (activities of daily living skills) faced by those with LFA. A good friend of mine pointed out, however, that often the "cure" for the behaviors more benefits the parents than it does the individual with autism. But, no one would argue that finding a treatment or behavorial plan that allows a child with autism to be toilet trained, to be able to speak , to dress him/herself would not be in the interest of the child.

Once again thanks for finding my blog :)

jazzygal said...

Hi Rob S...I have just come across your blog through Kicking Kittens and have enjoyed reading this blog post. I agree with most of what you have to say.

I am a stay at home mum to a 10 year old boy who's current diagnosis is PDDNOS. I am a mum who stayed at home to enable my son receive all necessary interventions to deal with his behavioural, speech & language and OT difficulties. These interventions, I'm happy to say,have been successful in our case and his diagnosis has been "reduced" from ASD to PDDNOS. Don't ask....long story!! As far as I'm concerned its' still ASD but here in Ireland the Health Department likes to play games with your head!! It is so refreshing to hear you make no such distinction either.

My son now attends a local mainstream school on a full time basis! I have blogged extensively on our journey to reach this stage and I blog also about his success and the issues we still have. Yes...he's high functioning and YES there are still some struggles!

When blogging about our journey I am always conscious of the fact that it is just that....OUR journey. As they say if you know one person with Autism....you know one person with Autism. Whilst, like you, I want to give hope to those coming along behind me I constantly say that my wish is that every child, wherever they are on the spectrum, receive all the necessary help to enable them reach THEIR true potential....whatever that may be. The problem of course is, trying to access the help whilst battling against Government cut-backs and short sightedness. No doubt that's the same the whole world over..... :((

xx Jazzy

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