Although we should never feel like we have to explain ourselves, a little understanding sometimes goes a long way. These are our personal beliefs.
Autism is individual to the person and the people around them. There is a saying, ‘If you know one person with autism, you know one person with autism’.
In terms of language, I recently spoke to the children and they both agreed they prefer the term autistic child. This is because they do not have autism. If they had autism, like a cold, it would go away again or if they had autism like a bag they were carrying around they could put it down when they wanted. I have one child who would put it down and leave it and one child who wouldn’t. So they are by their own definition autistic children, their autism is part of them.
When we speak about what works for us we do not expect this to work for everyone, nor do we expect it to work for us every time. Although we welcome comments about what works for you and your children, please respect us enough to make the right decision for our children. We get enough judgement from the world around us, we don’t need it from each other.
When we speak about autistic children or their families we are talking about our own personal experiences.
We like the autism puzzle piece, not for the connotations that it is believed to have with certain organisations or their belief systems but because for us autism really was the ‘missing piece’ to understanding our children, it unlocked their world to us and their diagnosis allowed us to better understand them and adapt us and our lifestyle to them.
We embrace autism but we also hate it. If we could rid our children of it, we probably would in the same way I would rid them of their asthma if I could, as although it is what makes our children them, it also cripples them in a world that is just not made for them and in all honesty probably never will be and could one day kill them.
We do not believe autism is a super power. It is a hard, gruelling, neurological condition, that if it was allowed to, would ruin every tiny aspect of someone’s life.
We still believe our children should be functional members of society in whatever capacity they can be and we are therefore still raising them with boundaries, consequences and manners (we do make allowances and adaptations for their autism and other additional needs).
We have positive days where we love life and love everything we have been handed and we like many others have bad days, where all we want to do is cry in the bathroom and ask why us? We will try to be as honest as we can about it all.
We are sorry if any of our experiences, actions or words offend you however please know that is not our intention. Also know our opinions or beliefs are not going to change just because your beliefs/opinion differ, this is what makes us individuals.
Our hope is to share with the world our journey and what works or doesn’t for us and we hope in doing so some may take away a little snippet of something that may work for them or if not maybe just the knowledge that they are not alone in all of this, something that in the early days we as a family did not feel we had.
