Over the past couple of years I’ve been hooked on reading blogs from parents who just get it. They’ve been there. And guess what? They hate autism. And they’re not afraid to shout about that fact. To many people it makes these writers seem brave. Someone who speaks the “truth”, but when it comes to me the truth is that it’s always made me feel a bit uncomfortable reading those words.
My son is autistic. Do I hate that part of him? Nope. I don’t. Do I find some days challenging and difficult? Yep. Many. So why is it that I feel down trodden and exhausted. Because I don’t hate kiddo’s Autism, so it can’t be that can it? Here’s what it is that I actually do hate.
1. The lack of provision in mainstream schools. I’m talking everything from limited staffing to a total lack of knowledge and understanding that would shock you to your very core if you haven’t witnessed it before. This is not necessarily (it could be I guess) the school’s fault. Why? Because they have zero money. Zilch. Nada. We have the current government to thank for that. They can’t fund courses, extra staff, experts or support using only magic beans that have been drawn by reception students, because let’s face it, they can’t even afford magic beans right now.
2. The lack of SEN school places that many of our children so desperately crave. Please see above re: funding issues.
3. The ridiculous, extensive, morale bashing, infuriating NHS waiting lists. You sit and wait for a letter. Because you can’t do anything without that letter. The letter takes two months when it should take two weeks. In that time you get no support. Why? Because the NHS has zero money. Zilch. Nada. Please see above.
4. I hate the fact that I wasn’t born with a natural set of skills to parent my autistic child. Everything that my mothering instinct told me to do had to be thrown right out the window. That’s hard. It’s a huge blow to the ego and makes you feel like you’ve failed before you have even begun. But is that Autism’s fault? Nope. Indulge me for a moment – imagine Autism is the Spanish language. I only speak English, not a word of Spanish. I arrive in Spain and expect them to understand every word I say. They stare at me blankly. Who’s fault is that? It’s not the Spanish person’s fault is it? When you parent a child the general belief is that you are the superior being and should know how to guide your child through life. In a sense, you are responsible for interpreting their wants and needs and teaching them. But when I only speak English and my son speaks Spanish, how do I understand him? After all it’s my responsibility as the superior being. Not his.
5. The lack of understanding and ignorance surrounding Autism in general. From fighting for government funding to succeeding in your request to convince the GP you need more than just a place on a generic parenting skills course. From teaching your friends why your child is not “badly parented” or “just needs discipline”, to the look from the lady in the supermarket, disapproving of your child’s screams. People do not understand Autism. And in this world where we have information at our very finger tips on our phones, tablets and laptops, that to me just seems archaic.
These are just a few of the things I really hate about the world around me. But are any of them Autism’s fault? Nope. Not in the slightest. It’s the fault of a neurotypical world who wish to travel one way up a two way street, and when they crash into something coming the other way, they don’t like it.
Now of course not all neurotypical people are like that. I for one hope I’m certainly not! And most of the parents I know who have autistic children are doing an absolutely incredible job! But the reason we struggle day to day is not because of Autism itself, it’s the environment of ignorance and under funding that our families are forced to survive in. It’s painful. It’s exhausting. But I don’t believe that my autistic son is the cause of that. It’s my responsibility to better myself. I can only hope that the rest of the world will follow suit and make my life a little easier.
Thanks for reading,