Monday, June 04, 2007

Autism Acceptance and Advocy

One of the things that I struggle with most as a Senior Therapist in an intensive in-home therapy program is the advocacy and acceptance of autism. I struggle with this not for myself, but for many of the staff I supervise and the parents I support. I struggle with this because I see each child I work with as a unique and interesting person just as they are and it saddens me that so many of the families support feel like they need to "fix" their child. Don't get me wrong--I want to help each child be the absolute best person that he or she can be. I want them to reach their full potential. But--I want them to do it with dignity and honor. I want them to do it with understanding on my part--not with me forcing them to "comply" with their loved one's standard of normal. I walk a fine line as a Senior Therapist. Here are some wonderful advocacy links that I think ALL therapists who work with children with autism should take the time to read.

The Autism Acceptance Project
Autism Diva


Autism Reality NB said...

"I want them to do it with understanding on my part--not with me forcing them to "comply" with their loved one's standard of normal."

So you would substitute YOUR assessment in place of parents and caregivers for what is required for these children to live a better life?

Parents have a difficult challenge raising autistic children without 3rd party judgments like yours or the judgments of internet "experts" who have never met the children in question and have no role to play in raising these children.

Some people choose to find "joy in autism". Others choose to find joy in our children and help them overcome the very serious deficits that autism brings.

I think you have crossed over that line you were talking about.

Rachie-Babe said...

First off, I'd like to thank you, as someone who is obviously HIGHLY involved in the autism community, for taking an interest in what I write. I'm flattered that you'd take time from your busy day to drop me a note, even if it is an condescending one.

I have no doubt that if you and I were to sit down and chat we would surely have more similar views than you might think. It appears that you want chidren with autism to succeed in the world. So do I. It appears that you care a great deal about people who have autism. So do I. You believe that intervention is important. So do I.

What I think is different here, is the way that we choose to care. This is probably an area where I'll just have to respectfully disagree with you. I believe that interventions can be done without forcing compliance.

I believe that all behavior has a meaning and that before any type of behavior can be "addressed." There MUST be an understanding of the behavior. I suspect that this could be an area where we might disagree.

I never said that I didn't think that people with Autism had deficits. We ALL have deficits and ALL could improve from a little help now and then. I never stated that people with autism should not receive any sort of therapy. On the contrary--I believe early intervention is KEY. My belief is no matter what type of intervention a parent chooses,it should be done with putting the person, not the diagnosis, first.

Autism Reality NB said...

Proper use of interventions such as ABA requires a functional analysis as a means of understanding the behavior in question. For non-verbal severely autistic children there is little other choice.

As for forcing compliance, with all respect, you put that out here on the internet without being very specific about how compliance is "forced" or what behaviors you are describing as requiring change or compliance to a different standard. You chose to become just one more voice condemning parents seeking to improve their childrens' qualiy of life.

Some behaviors as you surely know are very dangerous to the autistic child involved whether they involve serious self aggression or such activity as self starvation. Surely there is no moral dilemna involved with using accepted evidence based interventions to ensure compliance with what are in essence safe behavior standards?

The condescension if there is any, appeared when you passed moral judgement on the undefined group of "loved ones of autistic" persons who, according to you, force compliance with their standards. It is also found in the writings of those who presume to tell other parents that they must find joy in their childrens' autism or that they must accept that autism and you referenced a couple of sources for that line of thinking.

You can fill your boots with that acceptance of autism rhetoric if you want. But you may also want to ask yourself if you have simply had enough of dealing with the challenges that the parents you complain about deal with every day. And they deal with it because they care about their children. That is why they come to see you -- for help not moral judgment.

Rachie-Babe said...
This comment has been removed by the author.
Rachie-Babe said...

Again, I want to thank you for taking time to post comments within my blog.

I don't really have much more to add to this discussion. I'm sorry that you believe that I am passing judgement. That is not my intention but upon rereading my original post, I can see how it would be read that way.

I work with many WONDERFUL parents who love and accept their children as they are. That does NOT mean that they don't want changes in their lives. That does not mean that they don't want better for their children. They do. But they also see positive and wonderful things in their children the way that their children are RIGHT NOW.

I also have families that no matter how much progress or success their child makes, they can only see the deficits. This is not passing judgement, this is a direct observation.

I would feel the same way about my own parents had they not loved me an accepted me as I was--despite my deficts. How sad I would be if my own father saw only my deficits depsite all the of the positive changes I have made within my own life.


I can see how my words appear that I am passing judgement. That is (nor was) my intent.

Thank you so much for stopping by and I wish you the best. It is obvious that you are very passionate about your work in regards to those with Autism.

It is people with passion that continue to bring awareness and believe that is something that we can both agree on.

Passaro said...

The world of Autism is a complex one indeed...Complex for every one - from parents, to caregivers, to the child in question. Each person that is involved, one way or the other, with a child with autism has his or her own unique experience and ways of processing what can be both a very enjoyable or very challenging endeavor.
That said, it seems very unfair for certain individuals to 'cherry pick' and criticize one persons interpretation based solely on a 200 word blog...seemingly out of the clear blue. Doesn't it seem more logical to ask questions regarding Rachie-babe's experience rather than jump to conclusion, which is solely, based on YOUR (autism reality nb) experiences and not hers? It seems perhaps that confrontation for confrontations sake is the name of the game here...In my opinion such a tact is worthless even if your response is well reasoned.

Rachie-Babe said...

"The world of Autism is a complex one indeed...Complex for every one - from parents, to caregivers, to the child in question."

Passaro: it is a complex world, indeed!

Estee Klar-Wolfond said...

Doherty says: "Some people choose to find "joy in autism". Others choose to find joy in our children and help them overcome the very serious deficits that autism brings."

Autistic people call them challenges and they need not have any more with the negative rhetoric. People should not be reduced to a set of deficits.

The difference in what Doherty says and what autistic people say is that challenges need to be understood and people need to be given access -- this is not being done to the extent it could. We do not need more barriers to access. We need more inclusion -- done right and well and in understanding autism from autistic people -- not exclusively from non autistic parents. I am a parent of an autistic child and have learned the most about my son and about creating our lives by understanding him -- not changing him and this understanding comes from meeting many autistic people, reading what disabled people say about their disability... We want Adam to be valued for being an autistic person. And yes, we like to help him overcome the more disabling aspects of autism. This does not mean forcing him to be normal.

The rhetoric has to end in order that we begin to really see that there is a lot that unites parents -- that most parents want what's best for their child. But there is complexity here because "what's best" in a parent's perspective may actually not be what's best fo the child if the parent has no idea what it's like to be disabled or does not read the more empowering literature by disabled individuals and the parents who support them. (Read Michael Burube -- Life As We Know It). This is where we have to work harder to listen to what our disabled communities are telling us in order that we understand better. We need so much more sensitivity training!

What disunites parents is this idea that behaviourism is the be-all and end-all in "autism treatment" and that the only way for autistic people to live is to NOT be autistic any more. This is nonsense. We are living with this dis-ability and we know that there are many possibilities if we work to create them.

Rachie-Babe said...

Thank you so much Estee Klar-Wolfond! You were so much more elloquant that I was in my post. You made the exact points that I was trying to make--only much better!!!!