I love my children. I want to help them be the best they can be, and to have the opportunities to learn, grow and become kind, caring and capable adults. I used to think that all parents wanted that for their children, and perhaps they do want it for their own children, but not for other people’s children.
Living with Autism means having differences. You might communicate in a different way (or not at all), you might eat a different way (or not at all), you might play a different way (or not at all) and you might have a lot of health issues (or not at all). The world we live in doesn’t always appreciate differences, and they can make life very difficult at times, just ask any kid with Autism who goes to school. Assuming they can answer your question of course.
Having spent a lot (far too much) time on the internet in recent years, I stumble across articles and opinions that tell me how wonderful it is to have Autism. I wouldn’t know, I don’t have it, so I don’t have a personal opinion on it. I do, however, live with four children who are diagnosed on the spectrum, and a husband who also ticks a lot of the boxes. So my opinions are based purely on what I have seen in my own family.
I’d like to know why it’s not okay to help my children be capable, or to do the things they’d really like to do.
If I try and help one of my daughters with her anxiety issues so she can actually leave the house, then I’m being a bad parent, according to some people out there. If I speak about the worry of having a child that will need 24/7 care for the rest of his life (which may or may not be longer than mine), then I’m obviously not embracing the wonderfulness of Autism. People who confess their fear of their child dying from a vaccine which they’ve had a previous, severe reaction to, are bombarded with statements along the lines of, “I’d rather my child had Autism than measles”. Yet strangely enough, the risk of death and abuse for a child with Autism is much, much higher than of death from measles.
Part of Autism can be aggression, violence and self-harm. I guess I don’t embrace that wonderful quality either. I am not too happy when my son is beaten up (twice in two days) at his Special Developmental School because of a lack of duty of care on the part of his teachers. He can’t tell me that he is in pain or feeling strange due to his concussion, other than by his behaviour. I guess I should also have been happy and embraced Autism on those occasions when my son attacked his younger brother.
Inclusion is a big catch phrase in the Autism community. It’s great in theory, but how does it work in reality? Are all schools going to have less than 200 students, with classrooms of no more than 5 or 6 students with 3-4 teachers, and extremely high, un-climbable fences all the way around the school grounds? The ability to wear whatever clothing our children are happy to wear, or to go naked because that is part of their Autism? To defecate and smear it all through the classroom and on their fellow students, because that is how they express themselves? Flexible hours (night and day) to cater for those children who sleep for 5 hours (if you’re lucky) and are then awake for 12 hours before crashing for another five?
Is the community going to include my son by limiting the number of people that are allowed to be in a shopping centre at any one time, so his senses aren’t overloaded? The same for playgrounds or any other public place that might set my son off into a screaming fit due to bright lights, noises, smells, or just the fact that we have to wait in line at a checkout. I’d also like to place an advance order for public assistance when it comes to finances, as my son will not be able to earn an income, so somebody else will need to support him. We’re busy paying for him right now, but once we’re gone, he’s in trouble. I’m a bit worried about the lack of a pension (aged or disability) in the future, but I’m hoping that by the time he’s needing to live on the street, the community will be fully equipped for inclusion and he will be able to move in with some caring soul who won’t mind changing his poo-y nappies and paying for all his needs.
Autism is as varied as saying “colour” and expecting the other person to know exactly what particular hue of which particular colour you are thinking of. Every person on the spectrum (and off it) is different, and I’m fine with different. I am fine with people not wanting to change who they are, how they think, and how they live – as long as it doesn’t hurt someone else. If a person on the spectrum is happy to sit in their house all day playing computer games, and they have independent financial means to support themselves in that, then good luck to them.
Unfortunately, some of our children can’t tell us if they are happy to not be able to participate in the world around them. They can’t tell us if they are being abused, if they are hurting, if they love us, or even if they would like the opportunity to be able to play with other kids. Those who deny others the opportunity to learn to communicate, to be safe in their environment, to engage with others, to become active participants in the community, are being discriminatory. They are stopping a section of the community from doing the same things that others have every right to, but by crying “don’t change their Autism” they are taking that right away from them.
Oh boy do I hear you there! Hear you loud and clear!
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Thanks for being so honest. I can relate to some of the things you are saying.
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