Autism in a big family

I always wanted a big family, being one of four myself.

Autism changes the dynamics of any family, big or small. I only know its impact on a big family and unusually I only know the impact of autistic children on other autistic siblings.

I’m sure there are advantages to only having one child if that child has autism. You can concentrate all your efforts on them and financially, any money you can spare for therapies can all go to that one child.It must be a very intense relationship at times. You may also have a partner so there are two of you to share the special needs burden.

I think the ideal must be for a child with autism to have an unaffected sibling who cares for them and looks after them. But does that put too much pressure on that sibling to become a carer without being given a choice? I know most siblings take that role on without questioning it but it must be hard at times and do they sometimes long for a brother or sister unaffected by autism? In the way that some days, when life is hard, we as parents long for our chidren to be unaffected by autism too?

Then you have families like ours with more than one child affected. These children often have no empathy for each other, there is no leeway, no accommodation made for a child with autism by another child with autism. Times four in our family. There may be an unspoken understanding though. An acceptance that each other’s behaviour isn’t wrong.

For us, the advantage seems to be that unlike with a single child, we cannot bend to meet our children’s needs individually. If one boy doesn’t want to go somewhere, we will still go because the other three do want to go. We have pushed the boundaries with our boys because there has been no other way. We have never been able to use autism as a reason not to do things. So, if one boy refuses to leave the playground, we can’t tolerate his behaviour because of the other boys. We have to go or the others will start to get bored and behave badly too. Our tolerance to any behaviours has always been low.

Sometimes, I feel guilty that I cannot devote the time and attention to each boy that he needs. The hardest part is that even if one boy is away or out, I still have three other children with autism to look after. The responsibility as a carer never stops and the strain is relentless.

The flip side is that the boys are probably more able to cope with mainstream life and to be able to wait their turn and have learnt tolerance for others because they have had to. Sensory wise, our house is never quiet so they have learnt to manage noise and other people around them without the need for specialised OT or ABA programmes. They have had no choice but to adapt.

Despite the older boys still having a quite severe language deficit, they are very able to manage appropriately in social situations. Is this because they have had to manage in a group setting all their lives? With no allowance for their needs from those they live with?

I still worry about who will care for them when we are no longer here. It is every special needs parent’s greatest fear. In that way, my boys are no better off than if there was only one of them.

P1010140

 

Advertisements