I know in some quarters the word ‘disabled’ is considered a controversial one when it comes to autism but it is one that I personally feel is important. I strongly believe many autistic children and adults are being disabled by society as a result of their needs not being met. As I outlined in this blog post – Switching on the Light, if the world was made equally accessible to all, everyone would be able to find their place in it and easily reach their full potential but sadly, right now, that is not the reality.
I feel autistic children like mine with less visible needs often go unrecognised by others in part, because they do not see the accommodations and adjustments many parents make for their children everyday. However, autistic people do have genuine areas of difficulty and greater challenges (as well as great strengths and abilities) and this should be acknowledged. We often have to fight harder for DLA (disability living allowance) for our child and carers allowance for ourselves as well as support in education for example and that’s not fair.We are not indulging them, these things are real needs.
Just like my friend who is a single parent of a child who is a wheelchair user I needed to adapt my home to suit my child’s needs. While she needed a lift, host and ramps for her child I needed a quiet sensory environment with a predictable routine and no unexpected visitors for mine. While her child needs space to manoeuvre, mine needs a safe sensory space so i have to find ways of accommodating that which may be him or me using headphones to keep the noise down, give him the quietist bedroom and even insulate it for sound for example and also considering smells, textures, temperature and lighting that can overwhelm if not carefully managed.
Due to her son’s medical needs my friend frequently doesn’t get enough sleep plus her child has to take absences from school so there is no prospect of her holding a job. In the same way my son’s anxiety means he has sleep problems and I am sometimes up in the night. It meant he missed school days through anxiety induced illness which dad to school ultimately breaking down for him, becoming home educated, and me giving up work. My friend and her son commonly have access issues due to lack of ramps likewise we often can’t attend things due to a lack of understanding and or provision for autistic people.
When it comes to education, parents of autistic children have to fight more than most. Finding the right type provision, one that suits our children’s very particular requirements, is often hard so we need to: think outside the box, challenge thing accepted approaches and yes even provide it ourselves if necessary.
Of course it is wrong that the education system doesn’t appropriately support and provide for our children. However just as you would not leave a child in a wheelchair outside in the rain all day because the school failed to provide a ramp, you can’t expect an autistic child just to cope in school without the accommodations they need, ie an environment where they can access education in the same way as other children. So in the meantime parents must take care of their child’s educational needs, comfort and safety while fighting for what their child requires to thrive in school.
It seems to me that so much of the time there is a sense that children on the spectrum are expected to adapt to what suits others when their real sensory and social challenges mean a need for a different way of doing things because of their neurologically hard wired diffences and, whether you like it are not, are disabled by the world around them without the necessary adaptions both in out in the world and inside the home.
As parents we should always put our children first whatever their needs and do whatever it takes to support them to reach their full potential because that is what being a parent is all about, but the outside world also needs to acknowledge and accommodate all disabled people right across the board too, be they a child or adult and no matter how visible or invisible those disabilities are.