Posted on November 9, 2015
In the months before Boodi was assessed to be on the autism spectrum, I researched autistic traits tirelessly, recognising many in my little boy, while others bore little relation to him, the ones about not showing joy or affection (I have yet to meet an autistic child who exhibits those traits). After the unsurprising truth was revealed in January, I began reading every day about autism, and so the pieces fell into place. Some of it is still far beyond me, a lot of it is beyond the known world. Parenting a child with autism is very much intuitive, you feel your way through each day.
Reading about it daily, living with this boy who is my child, nothing more, nothing less, I forget how limited is the knowledge of other people, and it scares me. That people believe autism to be a dark world of dread, that people think it is ok to lock our children up, that they used to lock them up as small children and abandon them to a loveless, forsaken life, the belief that they are simply behaving badly and are increasingly pandered to, that they are lost children. It is a long list that goes on and on.
The biggest mantra in the autism world (the positive autism world, there are autism wars, between autistic adults and the parents of some autistic children, between those looking for a cure and those looking for acceptance, pathology or neurology, gift versus curse, vaxxer versus anti-vaxxers) is that autistic people are different, not less. So when your child is found to be on the spectrum it is neither a gift nor a curse, it is simply your child.
I forget that I know so much. I forget that in our house, autism is not something terrifying, not something to be dreaded. For us, it is Boodi. It is the other children that we have met, though we knew of none back in January. So when I read things like this article by the mother of a Down Syndrome child telling the dark truths of Down Syndrome in the face of the “joyous beacon” of Melbourne Cup strapper Stevie Payne, that 95% of pregnancies where the extra set of chromosomes are detected in the screening test, the foetus is terminated. I thought about this in relation to autism, where a similar kind of screening test for pregnant women is sought by many.
I’m not judging anyone. I took the Down Syndrome screening test for both of my pregnancies, and I remember Al asking me when I was pregnant with Boodi, what I would want to do if it came back high risk. I blithely answered that I didn’t know, but I would probably choose to end the pregnancy.
And if there had been a test for autism, performed at the same time? What then? Both the question and the answer make me want to cry. Because I knew so little. I knew a shady check list of stereotypes in the guise of symptoms. I knew that autism was bad. After your baby is born, you are reminded often to be on the look out for the insidious signs. All I saw was my gorgeous baby. My precious kid. God help me, I might have terminated if there was a test, because I didn’t know what I know now.
Although the probable causes of autism are complex and as yet still murky, they are certainly at least partly rooted in genetics, and if you have already had a child who is autistic, you have an elevated chance of any future children also being on the spectrum. The statistics are something like 20-23% if you have a boy, and 10% if you have a girl. Lady shows no traits. She is a very different child to Boodi, though girls are harder to diagnose, so she could be declared on the spectrum later, unlikely as we think that is. We didn’t start worrying about Boodi’s differences until well after I was pregnant with Lady, so it wasn’t something that we thought about when we planned her.
If we were to have another child, we would have to consider the chance that the child would be autistic, especially if we had another boy, particularly because we are older parents but, knowing Boodi, we would not be afraid, we would never want to screen and say, oh no, we don’t choose that child, he is flawed, and discard all of the beauty and hope that that child contains within his differences. That is part of acceptance for us, and that is the camp that we reside in, a world where autistic people are valued as different, not less, as vibrant and worthy, not a problem to be solved, not less deserving of life than a neurotypical baby.
Linking up with Essentially Jess for #IBOT