Every parent of an autistic child, and every parent that is autistic themselves or has autistic relatives, has to face the prospect that they may have (more) autistic children. For some this is very daunting, for others it is perfectly fine.
As many of you know, I have a son Andrew who is 4. He has high-functioning autism. He may also ADHD. Andrew will be tested for this within the next few months.
I have a daughter also named Arwyn. She is a little over 2 and shows no signs of showing autistic traits, however, Andrew was 2 1/2 years old when he started to show what I know now as signs.
Arwyn loves her brother and follows him everywhere. Everything he does, good or bad she copies. What scares me the most when she copies his vocal stimming outbursts, screams, spinning, tapping or flapping tendencies. It is (cover your ears now) a mind fuck for me, and I get really emotionally and mentally scared. My mind goes a million miles a second, and I start to panic, and think, I can’t do this with 2 kids, one is hard enough. Once I talk myself, excuse the expression, this is just a metaphor, off a ledge, I come back to reality and to reassure myself that she is just copying Andrew, and try to leave it alone.
What about the autism risk?
The sibling of an autistic child is, of course, at a high risk for being autistic themselves. Even if they aren’t autistic they have a high chance for having a lot of autistic characteristics and challenges. The risk is about 20%. Since Arwyn was born a girl, this risk is lower, but nobody really knows how much lower (and frankly we don’t even know that it IS lower) because they often present differently.
All parents should be scared. I am firmly of the opinion that if you are having a child, or have a younger child whether or not they have an autistic sibling, you should be terrified. It’s a massive risk. Always, and for everyone. You have no idea what is going to happen to this child and in many ways a baby is like taking your heart out and then watching it run around outside your body. We build our lives around our children. So what our children are like will affect us (and our other children) for much more than 18 years. Babies are so helpless, so vulnerable, and it is so likely that something will happen to them at some point. It could be at two months old or at twenty years old. This fear does not go away with age.
Am I scared of autism?
Am I scared of autism? This is a more complex question. Because it depends. What autism are you talking about? There has been a massive spike in autism diagnoses in the last decade or so, mostly because more and more people that would not have been diagnosed previously now meet the criteria. You jig the criteria slightly, and suddenly 40% more or less people meet it. And whether or not your child meets the criteria, they may need help with many challenges.
In my head I don’t call it autism, I call it autisms. To me the word has become almost meaningless because of how many different people it encapsulates. It’s like calling someone vision impaired. It could cover someone that’s short sighted and has to wear glasses for driving, while also covering someone that was blind at birth and has to learn exactly where everything is in their house and how many steps it takes to get to the traffic lights from their front door. The term ‘vision impaired’ is correct when applied to both of those people. Both will have their challenges. But it is a completely different situation.
There are many autisms
It is similar with autisms. There are very bright kids that have some challenges but will mostly grow up to lead a normal life. Or an entirely abnormal life where they invent a cure for cancer or become a member of parliament. And there are the ones that give their carers concussions, have IQs under 40, and have almost no communication.
So to be blunt, I am not scared of the first type. Maybe I’m naive. But come at me! The type that make good self advocates, go to law school, make speeches about how they are ‘different not less’ (because they are) and give special needs parents lectures on all the stuff they’re doing wrong. I can take that. Teaching is much easier when you don’t have to present every single skill over 1,000 times. And when the child can figure a lot out on their own.
REALLY early intervention
There are things of course that we as autism parents can do, quite early on. If we know what to look for. There have been studies showing benefits from early intervention (such as ESDM) even at the age of 6 months. I must emphasize though that these are very small scale studies. And also that parenting does not cause autism and early intervention is not a cure. But correct early intervention can help ameliorate many debilitating symptoms. Andrew was not even diagnosed when I was pregnant with Arywn or even after she was born. It was after Arwyn was about 6 months old or so when we found out, maybe she was older..Everything within the last year seems like a blur..Be Prepared but Be Flexible
Be Prepared and Flexible
Who knows what other things life will thrown at my life over the next year or two? All I can do is prepare for any challenges that might come at me and my family, and hope we can handle them well.