Sunday, September 08, 2013

Why Would I Hate You?

Recently, I came across this wonderful documentary on FASD. When I was watching it, at first I was expecting it to be the usual thing of adoptive and foster parents talking about how awful their child's birth mother was and how she damaged their child. But in fact, every mother in this documentary is a birth mother of a child with FASD, and the focus is on accepting the fact of FASD, owning up to the effects of their drinking, and getting the right help so they children can do the best they can do.

What I found particularly striking was the accounts that mothers had of explaining to their child that he or she had FASD, and it was caused by their mother drinking during pregnancy. Firstly, as a person with a developmental disability, I would like to point out how important it is, to the disabled person, to know that there's a name for their condition, they aren't alone, and it's not their fault that they're struggling with things other people find easy. For anyone with a developmental disability, if they have enough verbal skills to understand what you're saying, it is helpful to talk openly to them about what they have and how that affects them. (And even if you think they don't understand, to be on the safe side, talk to them about it anyway. You never know if they might understand more than you realize.)

But for a biological mother to tell her child about FASD must be especially tough. From the child's perspective, it's an explanation for their struggles, but from the mother's perspective, it's an admission of guilt. It's clear, from these mothers' accounts, just how tough it was to tell their children about FASD. One mother even said: 'I told Faith that I wouldn't blame her if she was so angry with me that she never wanted to talk to me again.'

Her daughter's response was probably not what her mother expected: 'Mom, why would I hate you? Why would I be angry with you? You didn't drink because you wanted to hurt me, you drank because you didn't know any better. I'm just glad to know that I'm not stupid.'

Her reaction is typical. None of the mothers who reported telling their children about FASD seemed to have gotten a negative response. In every case, the FASD person immediately forgave their mother. They didn't hold any resentment. And although it clearly took their mothers by surprise, and probably took many other people by surprise too, it really doesn't surprise me.

Firstly, research has shown that, compared to self-reports, other people consistently underestimate how happy a disabled person can be. There is this perception that having a disability is this horrible, devastating thing to deal with, and this is simply not borne true in the actual experience of living with a disability. Although some disabilities are certainly easier to deal with than others, most are far better to live with than most people think. And this is especially true for congenital disabilities, where the person has never known any different, never lost something they've come to count on. FASD is a congenital disability, so the person with FASD has never experienced life without FASD. It's hard to miss what you never had.

FASD is also a developmental disability. And I know, as an autistic person, how developmental disabilities affect characteristics that are basic to your identity. I can't hate autism without hating myself, and I suspect this is true for most developmental disabilities - if the person truly understands the pervasiveness of the disability's impact.* So if an FASD person has a good self-esteem, chances are they don't hate having FASD. Why would they resent someone causing it?

Then, there's the easy understanding of addiction. I don't know what it's been like for those kids, growing up, but I suspect for many of them, this is not the first time they've heard their mother talk about alcoholism. Depending on when she stopped drinking, they may even have seen her drinking, and seen her in the early stages of recovery. They've learnt from the start that alcoholism is a disease and not willful behavior, just like my brother and I learnt early on what PTSD was and how people might really be reacting to a past event that vaguely resembles the current event. If alcoholism was talked about as openly in their families as PTSD was in mine, they'll understand already why their mother drank.

Even if it wasn't, I suspect some of the characteristics of FASD may make understanding addiction easier. In particular, FASD impairs executive functions. As someone with executive dysfunction, I'm continually surprised at how much people think other people can control about their behavior. I'm so used to having difficulty controlling my own actions, it makes it a lot easier for me to imagine someone else doing something they don't really want to do. Addiction, therefore, is likely to make intuitive sense to someone with executive dysfunction - it's another kind of loss of control. I may not have had an addiction, but I have missed appointments I really wanted to attend, and been late for classes I enjoy, and lost objects I really wanted to keep. I know that desire is not the only determinant of behavior. And people with FASD probably know this too.

And lastly, there's someone they love and cherish. She's admitting a wrong she did to them, and she's clearly very sorry about it. In fact, judging from the emotional reactions that merely recounting the conversation provoked, I'm guessing most of these mothers were crying as they told their children about FASD and how they caused it. There's the person they love, crying and apologizing. It would take a pretty strong resentment for them not to want to comfort her and make her feel better.**

* I've seen some autistics people who think autism is just sensory overload and stimming. Those traits are fairly peripheral to identity, and you can hate those without hating yourself. (I hate sensory overload - I don't think it's possible not to hate it.) But when it comes to things like how you think and feel, that's a different matter.

** Or psychopathy, but the available research shows no association between psychopathy and FASD. Although reactive attachment disorder can cause psychopathic-like traits, most of these kids have probably not gone through enough to cause RAD. They were lucky to have mothers who got into recovery and have taken fairly good care of their children.

3 Comments:

Blogger Xuesheng said...

Great post/blog. Just wanted to point out, though, that some autistic people, myself included, do enjoy sensory overload. Personally, I find that overload makes me feel that everything is strange, new and intense, which can be either beautiful and uplifting or depressing and alienating, depending on my underlying mood. In fact, some of my happiest and most vivid memories are of sensory overload. I can easily imagine, though, that sensory overload is invariably unpleasant for some people, as certain stimuli are always unpleasant for me regardless of mood (for example, I have never had a pleasant sensory overload in humid conditions). Here is another example of an autistic woman who sometimes enjoys sensory overload: http://aspectsofaspergers.wordpress.com/2012/04/30/the-happy-aspects-of-aspergers/

Alternatively, perhaps this is just a difference in terminology- some people may only label unpleasant sensory experiences as 'overload', since the term implies an (unpleasant) excess. For me, it makes sense to use the term to cover both positive and negative experiences, since both result from overexposure to the same stimui.

4:28 PM  
Blogger Francine Juhasz, Ph.D. said...

I have found the information in the autistic child's astrological chart regarding his or her unique personality, inner life, talents and interests is an invaluable help to parents and their own self-love and self-esteem. Repeatedly, I have found the insights and understanding gained through an astrological study can not only soften parents' emotional reactions to their child's autistic behavior (and to themselves), it can help establish in their hearts an even greater fondness for that child. Francine Juhasz, Ph.D., Author, Your Autistic Child's Secret Inner Life

9:43 AM  
Blogger Francine Juhasz, Ph.D. said...

I have found the information in the autistic child's astrological chart regarding his or her unique personality, inner life, talents and interests is an invaluable help to parents and their own self-love and self-esteem. Repeatedly, I have found the insights and understanding gained through an astrological study can not only soften parents' emotional reactions to their child's autistic behavior (and to themselves), it can help establish in their hearts an even greater fondness for that child. Francine Juhasz, Ph.D., Author, Your Autistic Child's Secret Inner Life

9:44 AM  

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