Tuesday, April 11, 2006

Accepting the Messenger

The Hidden Messages of Autism

I tend to believe that autism is here with a message. Perhaps it is to make the environment and society, cleaner, kinder, less superficial, more authentic, less judgemental and more loving. I tend to think it’s biggest message is acceptance. Let’s set aside this talk about “causes”, “labels”, “cures”, “treatments”, “wars” and meet on a common ground where what we want for our children and students: Acceptance.

I have the opportunity to work with parents and to witness their journey as they go through stages of denial, outrage, grief, suffering, anger, acceptance and love in varying degrees and in varying order. I have learned the importance of meeting each parent where they are at on their path and accepting exactly where they are right now. In fact, I often apply this principal to the children when a parent asks me if they will “talk more” or “get better” or “learn new skills” or “have friends”, etc. and I tell them, “We are trying to help (your child) reach his/her maximum potential…there is so much in there, but we have to remember to love him/her exactly as s/he is right now. The more you concentrate on the perfection of your child and the wonderful things s/he is doing, the more you will see.” And my point is that on this journey, acceptance is key to growth. And I need to accept the parent exactly where they are at on their journey. Without judgement.

My own parents worked at a nonprofit: A church/school/sports organization for children with the motto “Their Future is Now” that my grandfather founded. Everyone who worked there made a very small stipened and were expected to volunteer nearly all of their time, including free time at the many, many events and activities (afterall, they were helping tomorrow’s youth). My mom, the most giving and kind person I’ve ever known, would back out of many of these volunteering opportunities despite pressure from the many of the other employees there and when I became an adult, she explained to me that she couldn’t imagine teaching other people’s children if she couldn’t even be there for her own. “Charity really does begin in the home”, she would tell me…meaning that people needed to teach morals and values to their own children first if they want to make a difference.

When I think of the maxim “Charity begins in the home”, I can’t help but be reminded that Ghandi told us to “Be the change you seek in the world.” And I realize that when I criticize society for not being accepting, it is MY responsibility to create change within myself. And when I look at the autism community, including parents, (some) teacher’s, adults with (insert word of choice here), I can’t help but think the one thing we all have in common is a desire for acceptance of diversity within society. But is it possible that we need to “be the change”? Is it possible that we are alienating people on their own journey of self-acceptance by judging them for being angry or sad or still looking for an answer, a solution a (gasp) cure? I have received several personal e-mails from parents who feel like they are being criticized and judged because they are trying a therapy that seems to be working, yet others insist that it means they are trying to “change” their child, and not accept them for who they are (ah, the irony). The e-mails I have received have mostly been parents of newly diagnosed children and they feel hurt and rejected by a blogging community that they had hoped to find support from.

I look at a teacher (in and out of the classroom), like Kristina, who really seem to accept each and every person where they are at on their journey and I can see that this change, this charity, this acceptance really did begin in the home. Perhaps, if a message of autism is acceptance, we need to focus not only on accepting those with a diagnosis of autism or those that consider themselves to be neurodiverse, but of accepting one another. Wherever we all are on our journey.

Peace,
SquareGirl

22 Comments:

Blogger Peter Matthes said...

In some parts of Asia, children with autism are treated with great respect. The other children bring them presents. It is believed that they are closer to God and should be treated as holy.

They also respect their elders, while we lock them in nursing homes.

Americans often have no clue.

There is a special treatment for autistic children at the DRC in the Florida Keys. The children swim with dolphins and thier brain patterns seem to change. No one is exactly sure why yet. I think the whole thing is amazing. I am trying to get my good friend's son Shawn to go down to try it.

4:12 PM  
Blogger SquareGirl said...

It's interesting you should mention that Peter. I like to read TAP (The Autsim Perspective) and a man by the name of Stephen Shore who is autistic, writes about his experiences in each country and how he percieves the way people with autism are treated within each country and culture. Of Finland, he said "What I find most striking about the community was that people with autism were accepted and integrated into the fabric of life just like everyone else."

I thought that was so interesting...I don't know too much about Finalnd, but I'm interested to learn more now.

4:39 PM  
Blogger Kristina Chew said...

Peter, what Asian country are you thinking of? An anthropologist friend is doing an epidemiological study of autism in South Korea and has found out that the "refrigerator mother" theory of autism is alive and well there.

SQ, thanks for clearing some of the rocks out of the road--I appreciate a smoother path!

6:16 PM  
Blogger Zilari said...

Is it possible that we are alienating people on their own journey of self-acceptance by judging them for being angry or sad or still looking for an answer, a solution a (gasp) cure?

I try not to judge people, but the fact is that some supposed "cures" are really dangerous. Certain attitudes are also dangerous -- such as the one that claims children should be taught to behave like everyone else just so they don't get picked on. As much as I try not to judge or alienate people, there are some things that absolutely cannot be ignored.

However, I recognize that for some parents (or autistic adults, for that matter) there may be a simple lack of awareness that autism doesn't HAVE to be a terrible thing. If all one hears is "I'm sorry" or, "How awful for you!" or "How devastating!", then it can be difficult to go against the tide (or find a different ocean entirely) and start thinking about living rather than mourning.

Therefore, I do not go around calling people names or telling them not to feel their feelings. Neither I, nor anyone else, can (or should) control what someone else feels. But I (and others) can share information that shows, to an extent, that there is a path other than misery. This is what I attempt to do in my own blog, where I tend to "explore" thoughts rather than make statements.

8:21 PM  
Blogger SquareGirl said...

Kristina, I've heard something to that extent as well...I'm curious to learn more. And I'd have to say, thank you for clearing the path for all of us!

Zilari, I find you very non-judgemental and appreciate that about you very much. I agree that some cures can be dangerous and it is our job to help parents see that, without condemning them or making them feel badly for what they don't know. You do a great job at providing information for parents and I appreciate that about you.

8:47 PM  
Anonymous Ben said...

http://benhay.blogspot.com/2006/02/quick-howto.html

9:55 PM  
Blogger SquareGirl said...

Thanks Ben!

10:01 PM  
Anonymous Dimitra Daisy said...

You write the best posts lately! I am amazed. Keep it on.

1:25 AM  
Blogger Mamaroo said...

I feel with me and on my own personal journey, I make great strides only to get zapped with some anger followed by some sadness. It is after these little episodes that I make another great jump in my own personal progress in life. I notice much the same pattern in my son's (my messenger's) progress.

6:14 AM  
Blogger Christine said...

SG: You're the best! What you you've been writing about lately is really important. The parents and children that you work with are very fortunate.

I cringe when I think about my outlook 8 months ago when my journey with autism began. I have adopted and shed many different perspectives along the way. Learning and growing will do that to you. ...

7:12 AM  
Blogger SquareGirl said...

Dimitra Daisy, Thank you.

Mamaroo, that seems to be the way of growth. I remind myself of that when I feel angry or sad...

Christine, I think we would all cringe if we looked at where we were 8 months ago about anything, but I think we should accept ourselves as well and look at where we were at in a loving way. I used to have regrts, now I chose to be thankful for how far I've come. So good for you for coming so far!

7:43 AM  
Blogger Doug said...

Reserving the right to be judgemental and evil later, I agree with you. Every life is messy and no-one has all the information they need. Just as long as they agree with the right platform, we shouldn't judge them.

6:26 PM  
Blogger SquareGirl said...

Doug, I would never even think of denying you that right. We never have all the information we need in order to judge someone.

10:52 PM  
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