Saturday, November 15, 2008
For Parents Who Are Torn Between Autism Acceptance and Autism Treatment...
If you feel torn between accepting your child with autism and treating them, there is no need for you to. That’s right; you do not have to choose between accepting your child who has autism and treating their autism. You can do both. I repeat: You can fully accept your child with autism AND you can treat your child’s autism without in any way diminishing your acceptance of or respect for your child.
You should unconditionally love and wholly accept your child who has autism simply because he or she is your child. As parents, we love and embrace the children we have been blessed with because that’s what parents do. As parents of children who have autism, we must acknowledge that autism is a part of who our children are and that autism will affect them, us, and other loved ones… because that is our reality. Our children are who they are, and their autism is an important element of who they are. We must accept them for who they are and support them as best as we can.
It is your right, privilege, responsibility and obligation to make decisions that are in your child’s best interest. If you are researching and implementing therapies, treatments and other interventions that you believe will be beneficial to your child and will help them to lead a productive, meaningful and fulfilling life with the greatest degree of dignity and independence possible, then you are doing the right thing.
I implore you to avoid feeling compelled to choose between accepting your child and treating your child. You don’t have to; you don’t need to; and you shouldn’t. Rather than choose sides, choose to accept your child for who he or she is and to help him or her reach their full potential.
Michelle McFarland-McDaniels is the mom of two beautiful preteen girls who have autism. She is also a wife, writer, blogger and teacher. Michelle publishes the Autism Assistance Resources and Information blog. She is also the publisher of Funding Autism Treatment and College Resources for Students with Autism.
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Sound advice.
ReplyDeleteVery good point. After a little over one year since I had first heard about my daughter's diagnosis, I think this was a challenge for me. Fundamentally, the most difficult part is accepting certain behaviors though. There are some behaviors that are not acceptable by society. I still struggle on how to help my daughter be herself and yet, try to help her understand how to better behave. It's a constant struggle, day to day...
ReplyDeleteI have never understood how these two things are mutually exclusive, and I think it's a waste of precious time and effort to debate it. Thank you for stating it so simply and effectively. I hope more parents will feel reassured.
ReplyDeleteI really never got the conflict anyway. Maybe I am just weird.
ReplyDeleteBeen thinking about this too - and the need to be capable of complexity, and not get too hung up on apparent contradictions. Nice post.
ReplyDeleteWow. This could not have possibly been more timely. Thank you.
ReplyDeleteIt is your right, privilege, responsibility and obligation to make decisions that are in your child’s best interest. If you are researching and implementing therapies, treatments and other interventions that you believe will be beneficial to your child and will help them to lead a productive, meaningful and fulfilling life with the greatest degree of dignity and independence possible, then you are doing the right thing.
ReplyDeleteIf you take the responsibility of making decisions that are in your child's best interest seriously, it's going to take more than merely "researching and implementing therapies, treatments and other interventions that you believe will be beneficial to your child". Belief does not confer reality or ethics. I can understand wanting parents to feel empowered, but a blanket, unqualified statement like this leaves the door wide open to the pervasive quackery in the autism "treatment" world.
I implore you to avoid feeling compelled to choose between accepting your child and treating your child. You don’t have to; you don’t need to; and you shouldn’t. Rather than choose sides, choose to accept your child for who he or she is and to help him or her reach their full potential.
No one is suggesting choosing sides between acceptance and helping a child reach their full potential.
Wonderful post, Michelle!
ReplyDeleteI think it is definitely possible to pursue treatment WHILE accepting our children the way they are. I do think, however, that sometimes, the things they do aren't things they want to do. When I put my son on the GFCF diet over 3 years ago, it changed his behavior (and bathroom habits) drastically. It makes a difference. I know that my children will find their peers, who are like them, and will accept them for who they are. But finding those peers is the hard part; even when you are neurotypical.
As far as the behaviors that interfere with their lives...it is my job to teach, provide therapies that give them other alternatives. After that, what they choose to do is up to them. But as a parent, I need to open up the world for my children, teach them the skills they need to survive in the world. Many times, my children do not know what what they are doing is unacceptable or annoying. And sometimes the behavior is due to no other options. Learning new alternatives has helped tremendously.
I have two on the spectrum, with Aspergers/HFA. My third child is not diagnosed, but we are 90% sure she is on the spectrum, as well. Teaching skills is a challenge at times.
T.
My son is almost 18, and he was diagnosed at 3. We've been "autism parents" for almost a decade and a half. There are things you learn, in that amount of time.
ReplyDeleteThis whole question hinges on what you mean by "autism treatment".
If you mean removing obstacles, mitigating impairments, developing skills... then there is no conflict with acceptance.
If on the other hand you are out to eradicate everything about your child that isn't "normal", then you're going to think there's a conflict between acceptance and treatment.
There are things that really matter, like gaining self-care skills, like learning about dangers to avoid, and like gaining literacy (which should be started early, with letters and sounds, even if your child doesn't have expressive speech, because receptive speech is almost always developing even if expressive speech is not, and because basic literacy skills will enable keyboarding as a means of expressive communication... and having a means of expressive communication helps steer clear of maladaptive behavior as the only means of dealing with distress... and having a means of expressive communication opens the door to further learning)...
...and then there are things that matter a lot less in comparison, like stimming and flapping and eye contact. (Yes, I know, the nonautistic majority depends on eye contact for feedback... and eventually, that's how to teach it, and giving brief looks every so often at the other person's mouth or nose will give just as good feedback as looking into their eyes. But that's something you can teach later on, once you're on your way with the really big initial hurdles like safety and basic communication.)
At a certain point, you stop wanting to change your kids, the things about them that make them *them*, and tell society to go suck a rock if it can't deal with harmless difference. Hand-flapping is in that category. And yes, you can get reasonable people to accept such differences. Most people, if things are explained to them, are reasonable. And a good fraction of the unreasonable ones can be (and should be) *shamed* into doing so. The ones you can't even do that with -- the ones without a conscience -- are dangerous and should be avoided, or, if possible, neutralized as factors in your family's environment.
The best approach to determining whether a behavior is reasonable and should be accepted as such by others, even if unusual, is to identify and understand the boundaries involved, and whether any legitimate boundaries are being violated.
For example, screaming violates others' boundaries: sound pervades the space it travels through. It invades the space of everyone else within earshot. Hand-flapping or other harmless quiet stims, on the other hand, do not. Others do not have a "right" not to have to look at people stimming or engaging in odd but noninvasive behaviors, any more than they have a "right" not to have to share a public swimming pool with others whose skin is a different color.
It's very much a question of picking battles: from which of them is your child going to get the greatest benefit. It's not resignation or "giving up" to choose not to pursue changing the things that in the bigger picture don't really matter, or that society has a moral obligation to accommodate. Better to put the energy you have at that point in the game into helping society live up to its moral obligations.
It's really about learning how to work both sides of the street... effecting positive change in both the individual, and in the surrounding society. And in both cases, with the right attitude, a little smarts, and enough energy invested in the right places, it can be done.
That, my friends, is what a pro-neurodiversity approach is all about. It isn't as evil as the nay-sayers would have you believe.
And like Madge the manicurist on those old Palmolive dish-soap commercials, I'm about to tell you, at the end of this very long comment, that "you're soaking in it": I'm not only the parent of an almost-18-year-old autistic young man who's come a very long way (but is still definitely as autistic as the Pope is Catholic!)... I'm an adult on the spectrum myself. About 10 months after Jeremy was diagnosed with autism, I was diagnosed with Asperger's syndrome. I am one of the "evil neurodiverse", right in your midst -- oh my!
I see these issues, acceptance and treatment, from both sides. And having seen and lived both sides, I say, as I did at the outset of this Aspergerishly long comment [grin], that it all hinges on what you mean by "autism treatment".
Learn how to respond to the important things, how not to sweat the less important things, and when it's time to let your child be themselves and tell society in no uncertain terms to go suck a rock.
That was beautiful, Phil Shwartz. it is so hard to convince some people what neurodiversity is all about. Some people just want shortcuts to fixing problems associated with autism, without discriminating between harmful and socially ostracizing. They want it done as quickly as possible. That is why they want a cure. Except really, it will actually take a lot longer to wait for the cure than to treat some dangerous behaviors now.
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