Tuesday, April 8, 2008

The Five Stages of the Autism Parent

If you weren't raised by wolves, you've probably heard of Elizabeth Kubler-Ross's ground-breaking model of the five stages of grief. Here's the list:

1) Denial
2) Anger
3) Bargaining
4) Depression
5) Acceptance

People associate the theory with death, and Kubler-Ross did include death, but she also applied it to any catastrophic personal event in a person's life, such as divorce and job loss.

As a parent, receiving a diagnosis of autism for your child can certainly be considered "catastrophic." Don't misunderstand me, because there will be someone out there who does! I'm not saying the child is a catastrophe! I'm saying getting the diagnosis is! It changes everything.

Most people understand the stages as a progression, that they fall in the order listed, but Kubler-Ross noted that this is not necessarily true. Many people skip one or another, and many people get stuck in one of them. I talk to a lot of parents. I see many of them stuck in one. I, myself, was stuck in Depression for quite some time. I now believe that, as parents, the best way to help our children is to get ourselves to the state or stage of Acceptance.

Denial seems to affect dads the most, more so than moms. They often get stuck in "there is absolutely nothing wrong with my kid" or they consume themselves with work to avoid having to face the day-to-day reality of having a child who can't be "fixed." I'm not saying ALL dads are like this, but anyone who's been paying attention to the world of autism can see that it's the moms who most often jump past Denial and into Anger.

I see a LOT of people stuck in Anger. They're certainly all over the Internet. SOMEBODY -- the Government, the CDC, the doctors, the "Big Pharma" companies -- did this to their child, and "They" are gonna pay! Personally, I think this is the most dangerous stage for a parent to be stuck in. It helps to be in it for a short time, because anger can be very motivating and can give us strength, and we parents certainly need to be motivated and strong to get our children what they need. However, at some point, parents need to get over it if they're ever really going to help their child move on with life and living with autism.

Bargaining - I'm not sure I see this that often, but then again, it may be very personal and internal. Kubler-Ross identified people bargaining with God, and that can be a very private thing. Then again, is it a form of bargaining when people try any and all desperate and potentially harmful measures to cure their child? Many people seem to me like they'll certainly trade a "whole" child for the one they were given, no matter what they like to call it (again, Denial).

Depression, as I mentioned, is one I'm intimately familiar with. I believe, and I've seen studies confirming this, that most mothers of children with autism suffer depression to some degree and for varying amounts of time. It is an incredibly exhausting, overwhelming, and guilt-ridden state of being to mother a child with autism, especially when Dad is stuck in denial and not helping. If you think you might be stuck in Depression, please get yourself help! Please ask for help from family and friends!

Kubler-Ross considered Acceptance the healthiest stage of grief. Whatever the catastrophe, it's best to move on and live a life that acknowledges the death, the break-up, the diagnosis, and cope with what comes after. Autism, right now in 2008, is at a point that makes this difficult. Because there are theories about what causes it flying around out there with no solid answers, it's hard to just accept that this is how this child's life is going to be and to plan the future accordingly. It's hard to accept that we can strive for a cure, we can do all the therapies and the treatments, while at the same time, we have to accept that things might not change in this generation. Discoveries and cures can and do take decades, especially with something as complicated as this. If it was as simple as "vaccines cause this, " we'd be over and done with it already.

I've heard that it's very different for parents whose children are born with Down's Syndrome. Because medical science has pinpointed a definite cause, because the parents know for certain that nothing they did caused it, because they know for certain that there is no curing it, those parents can more easily get to Acceptance. They know they need to work on a plan for the future. They know they need to "move on" to help their child for their entire life.

I believe that for our children to have a happy and positive future, we parents of children with autism need to take a lesson from those parents and get ourselves to Acceptance.

Of course, there will be many parents who angrily retort that I'm telling them to "give up." That's not it at all. Don't give up! But don't consume yourself to the point that you and your child are not enjoying life now, and please, please, please, don't get stuck to the point that you aren't thinking about the future because you're convinced your child will be cured soon and the future will then be taken care of. As the saying goes, "hope for the best but plan for the worst." That's Acceptance.

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