I'm sure over the past few years many of us have worried about the idea prenatal tests for autism, but for me at least, the concept seemed something that could only happen in the remote future...something to be concerned about, but hopefully would never come to fruition.
Well, the days of hoping this would never become fact, it seems, are coming to an end. There are already reports of prenatal tests for autism, and though they seem to be rather inaccurate at the moment, I'm sure it's only a matter of time before they're 'improved'. It looks like we're one step closer to the day when, as is stated with a look of longing by a mother on the "Autism Everyday" video, "I know that science is making great breakthroughs, and my hope is that by the time (her non-autistic child) is ready to have a baby we'll have a cure or we'll understand how to prevent autism."
A couple of years ago, my son and I travelled far from home to visit a medical specialist we don't have access to in our area. We spent a few days at a Ronald McDonald house while there (a really positive move, by the way--if you're ever in a similar situation, I highly recommend trying 'the house'), and while there we became acquainted with a young father and his son. The little boy, 6 at the time, had Downs syndrome, autism, and a heart condition. I was so impressed with this dad as we chatted about our kids. He was so obviously in love with his little boy, so matter of fact about his difficulties, and so very proud of his accomplishments. When I (panicky, overprotective mum that I am) saw his little boy was having a hard time getting down from the tall rocking horse that my own son couldn't dismount alone, I rushed over to give him a hand. The little boy put his hands out at me (Stop! I can do it myself!), pushed himself back over the rear of the horse, and slid down the back supports, wrapping his little feet monkey wise over the wood for grip.
I laughed to his dad--he's so independent! And look how well he communicated his intentions to me so clearly. The father, quietly proud, told me how he and his son often went out to climb rocks on a mountain close to their home; that his little boy loved climbing on things above anything else. And, yes, though mostly non-verbal, his son was learning sign well, and was able to combine that with his words to get most of his needs met easily. I was impressed with the down to earth attitude of this father, his willingness to accept his child’s differences, and look for strengths in areas others might have missed.
We talked for awhile, killing time while the children tore through the playroom toys and awaiting our appointments. What stands out in my mind about that conversation was the process of acceptance he went through in dealing with each of his son's difficulties--Downs syndrome, he said, was obvious at birth with his son, so it was fairly easy to come to terms with that. As he grew and autism became evident, that again, was difficult at first, but you learn about it, adjust and move on. The one thing, he said, with great emphasis, the ONE THING he found really hard to deal with was the heart condition. He said simply "We love him so much, we want to make sure he's with us as long as is humanly possible."
Just before it was time to go to our 'big appointment' with the specialist, I was feeding my son in the kitchen, and at the next table, this father sat and talked with another family. I zoned out most of the conversation, but at one point, I heard one of the women say to this father "There's a prenatal test for Downs syndrome now, did it miss your son's condition?" And the father answered "No, my wife didn't have it done." This caught my attention, and I glanced over in time to see the woman draw back...
"What? That's terrible, why didn't the doctor offer the test? Everyone has them done now! You could sue him for malpractice!"
And I groaned inside. She probably didn't realise how horrible that statement was, or where this was leading...and I felt my heart sinking, thinking how the father must be feeling.
"No, my wife and I discussed it before hand, and knew there was no point in having the test in the first place. If there were a positive result we would have had him anyway...and I'm not a bit sorry! He’s a beautiful kid." he said…amazingly calm and gentle.
Hearing the mother scramble to save face, I looked over to see if he was ok, or needed help…and he gave me the most beautiful, wry smile from across the room.
I wonder how often he'd had to field that particular question. Was this something he'd experienced so many times he had the answer down pat? Did he know how to put someone back in their place gently from experience? I don't know, we only had time for a brief goodbye, and when we came back from our appointment they had gone-- off to start a cross country tour with his wife and son, career on hold, with money saved for their adventure of a life time. I hope it was a beautiful vacation for them, and somehow, I'm sure it was. Some people are so down to earth they seem to just know how to treat life as an adventure, keeping their footing in most all circumstances.
So.
There will probably be a time in the not so distant future when we autism parents might very well be called to answer that same question this father did. The question that implies no one in their right mind would have an 'abnormal' child if there were a choice. The question that implies...your child, not 'typical', isn't wanted by society and shouldn't be here. There is a prevention, why didn’t you use it? If your child is born autistic, it must have been a mistake with the test, or the doctor messed up…you couldn’t possibly have chosen this!
This is a question I’m sure many parents of Down’s syndrome children have to live with, and the implications that come along with it. In a time when 80% of foetus’s tested positive for Downs are aborted, when there are increasingly few Downs individuals, and those that make it through that ethical dilemma to birth have to deal with the knowledge that most of their kind are now so devalued they are aborted without thought or concern--how hurtful this question must be.
It seems our scientific knowledge continually progresses too fast for our ethics to keep up. I wish there were more outcry against prenatal testing, not just in terms of testing for autism, but for other differences and disabilities as well. I'm sure most Downs syndrome people and their families would agree.
