The Sibling War

One of the biggest questions couples face is 'Do we have a child?'. It's a challenging one, as having a child will always result in some level of sacrifice, and having children is not necessarily right or a priority for every couple. The second biggest question is 'Do we have another child?'. Adding to your family is a bit of a tricky concept. How long do you wait between children? You probably want them to grow up relatively close to each other, but having children close together can be extremely stressful both physically and financially for the parents. I think it's an even harder question for parents of a child with a disability, particularly a genetically inheritable disorder such as Autism. Are you prepared and willing to be parents of two children with Special Needs?

For the general population, the risk of having a child with ASD currently stands at approximately 1 in 150 in developed countries such as Australia and the U.S. But what about those who already have a child with ASD? Recent studies show that the statistics begin to stack up against you. Some studies make a broad claim of approximately 1 in 10, whilst other studies are more specific and break it down for each gender. They conclude that if you already have one ASD child, and your second child is a girl, the risk is 9%, whereas if you have a boy, it's a staggering 26%! For those who already have two children on the spectrum, the risk rises once again to a heart stopping 1 in 3, or 33.3% (non-specific to gender).

Although much is still to be discovered about Autism and how it occurs, these statistics strongly show that there is a genetic component to the disorder that needs to be considered. There are family history factors that can also have an effect on these statistics. For example, if your child seems to be a statistical anomaly, there is no ASD, and no other mental disorders such as Schizophrenia on either side of the family, it is probably more likely that your child just happened to have a random genetic mutation, or environmental factors may have influenced the ASD. Whereas, if you do have a family history of mental disorders on either side of the family, this can make your 'risk factor' even higher.

Genetic counselling can be a helpful tool in finding out the specifics of your genetic risk. A gene with too many copies, or where something got changed may be detected, but the meaning of this is less than concrete. The dominance or recessive nature of Autism genes is not yet known, and even if a 'faulty gene' can be detected, it does not automatically mean that Autism will present in that individual. Genes have on and off switches; we can have them present in our body, but they might not necessarily be doing anything. The same genetic defect can be found in both the mother and the child where the mother does not have ASD, but the child does. There is probably more than one gene involved in Autism, and of course there are environmental factors which also come in to play. So is it even worth trying genetic counselling? I cannot say.

Science is yet to get to a point where we can pin point ASD on a gene map with 100% certainty, and the likes of neonatal genetic screening such as what is offered for Downs Syndrome is probably in the realms of 10 years away. Most parents asking themselves about a second child would be past their child bearing years if they were to wait that long to decide.

So how can parents decide? Well, your guess is as good as mine. Inconclusive science can muddy the picture as much as it can bring clarity, and blind hope and faith is folly. Parents need to brace themselves for the risk and the possibility that this may happen again, and be wary for the signs. They can celebrate if any possibility of ASD is dismissed and, they still have the right to be shattered if their greatest fears are realised. Friends and family should be as supportive as possible and never suggest that the parents "knew what risk they were taking" because, really, they don't.

Living left of normal

Having a child with special needs is a difficult job. Some may label it 'impossible'. You lose all sight of normality, or more tortuously you can just see it there sitting on the horizon in your no go zone. Sitting there in the park while you stare at all the children laughing and playing normally while your child stims and fixates on a wheel.slapping you in the face when they're the only child not invited to a birthday party. But I think as parents of children with special needs we start to live a new kind of normal our normal. Where play dates are replaced by therapy where special outings are omitted so you can do more therapy.

I mean who decides what normal is anyway? It just seems like a statistical fallacy. Greater than 50% of the worlds population do X so if your not doing that, you're not normal. Or is it just a manner of perspective? You see all your friends, all your friends children enjoying what we might consider luxuries such as a carefree visit to the shopping centre, a meltdown free visit to the hairdresser and fantasise what it must be like to be them. What it must be like to be normal.

The decision of denying Alex 'normal' 4 year old kinder was an easy yet heartbreaking one for me to make. It came down to a simple equation of no aide time = no mainstream kinder. After last years nappy nightmares I knew with out an aide, he would be once again left to wander the playground for countless hours in soiled nappies or clothes. Of course NT parents all seemed to think I was doing the wrong thing.

The flawed assumption of denying him time to socialize with normal children will only make him less normal. Don't you know by letting him only socialize with Autistic children will only make him more Autistic and he'll only learn more Autistic behaviors? What NT parents don't seem to understand is with our kids, just because monkey sees, it does not equal monkey do.

Our children learn differently. If only it were as simple as force him in to more normal situations he can't comprehend and he will just become normal by some means of social osmosis. If anything, these last 10 months in an Autism exclusive learning environment have made him 'less Autistic' although I do not believe this to be a correct term or description of any sort. Let's just say the gap between normal and my son has shrunk somewhat this year.

I grieve somewhat as this isn't some phase that we can work through and I grieve on my sons behalf. His view of the world and ability to interpret it will always be impaired. I yearn to know what it must be like to parent a normal child. To play without set rules of where the car must be, or where the helicopter must go. To have the freedom of taking your child out for a random outing without fearing the meltdown consequences. To not have to make the choice between time playing at the park, or more therapy. But this our normal, and any different would seem unusual to us.