Every parent of an autistic child, and every parent that is autistic themselves or has autistic relatives, has to face the prospect that they will 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 who is just under 3.5, who has moderate to severe autism. He also has an intellectual disability and ADHD. He is also a very loveable little boy and hugged me for about ten minutes this morning because I sung ‘Good morning’ to him (from Singing in the Rain).
As many of you also know I am now about four months pregnant with baby no. 2. This baby is likely to be a little girl. Obviously we don’t know with 100% certainty but it is very likely from the scans etc that this is so.
Michael has always liked babies. He sometimes randomly kisses babies at the playground. He loves hugging and kissing his cousins. But he loves his privacy and doesn’t like loud noises, unless he makes them himself. So I’m not sure how he will react to a persistent loud noise in his own house. I think the first six months will be tough. I think baby will be nothing more than an irritating speed bump. But I do hope that eventually they can have a good relationship. I don’t think it will be anything like a normal sibling relationship. And I really hope his little sister won’t have to be a third parent, that she can have a childhood. But I think there will be love and some sort of interaction and that’s enough.
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 it is a girl this risk is lower, but no body really knows how much lower (and frankly we don’t even know that it IS lower) because they often present differently.
We knew this going in. Often parents stop once they have an autistic child. They will have either an only child, or that child will be their youngest. Or else they might already be pregnant with the next one when the first one is diagnosed. This is not our case. We knew about Michael long before I got pregnant, and we did it anyway.
All parents to be should be scared
Are we scared? Yes we are. I am firmly of the opinion that if you are having a child, whether or not they have an autistic sibling, you should be terrified. It’s a massive risk. Always, and for everyone. Having a child is not a reasonable decision. It is an emotional one. 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.
I get scared every time I get sick (I get a virus a month from Michael) because maybe I’m giving her something. Every time I have a tummy ache or lift something a bit heavy and feel a twinge. If she moves too much or if she doesn’t move enough. So yes we are scared.
Are we scared of autism?
Are we 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. Plus many people (like Michael) that are somewhere in the middle.
So to be blunt, I am not scared of the first type. Maybe I’m naïve. 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.
The risks of a severely affected child
A child that is more severe, I can handle too. I have one already. In many ways I think I would be very lucky to have another child exactly like Michael. He is so happy, loving, affectionate, and also he gives the best hugs all day long. I would prefer to have a child with a normal IQ, partially to help look after Michael one day. But if it doesn’t happen I am not scared. I am preparing and gearing up for it, in fact, every day. It could happen. If it happens, hopefully I’ll be ready.
But there is a small possibility of a truly severely affected child. I think the odds are about 2%. Maybe she won’t be able to be in the same room as Michael, ever. They might even need to be in separate cars to go to school. Maybe she will harm herself, or others. There are many truly frightening possibilities that I can’t really do much about. All I can do is tell myself that the possibility is quite low, and hope for the best. And if it happens, accept that this is how things have turned out, and try to make her life as bright and happy as possible.
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 emphasise 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.
Although there are actually only two places in Sydney that do Early Start Denver Model, one clinician happens to be quite close to my house. So it is likely that I will watch my little girl and if she shows any signs at 6 months old, then off we will go to this lady so I can get a bit of training. I am also a big fan of Gymbaroo (which is kind of like a structured playgroup aimed at babies and toddlers). It helped me diagnose Michael and it’s useful to have about ten children about the same age as yours, so you can see what behaviours are to be expected and what is unusual.
Main Focus: Milestones not housework
The main thing that I will concentrate on in the first year is the developmental milestones. All parents do, of course. But I allowed a lot of leeway for Michael in the first year. I told myself all babies develop differently. So when he didn’t roll over until 10 months old, I thought it was ok. I am going to be a much bigger control freak with baby no. 2 (poor thing).
This baby is going to get some pretty intense parenting. Songs, books, toys, and a LOT of tummy time, are all going to happen. I have already told my family that from age 6 months to 12 months I will possibly be in early intervention mode and will need a lot of help with housework, cooking, cleaning and laundry. This can take up about 90% of the day with two young children and I can’t afford to do that. Michael himself will have five different therapists looking after him so he should be more or less covered. But the house, the food, and the laundry will be done by other people or will have to be done in an extremely second rate way.
My Mantra: Be Prepared but Be Flexible
Of course these are all my PLANS, and my INTENTIONS. And I already know that things aren’t going to actually happen like this. The only thing I have to provide for this child is love, food of some sort, a roof over her head, and a healthy environment. Everything else is extra. Who knows what other things life will throw at us over the next year or two? All I can do is prepare for any challenges that might come at us, and hope we can handle them well.