The Education System Fails Autistic People

Our education system is fundamentally failing. It failing autistic people, more broadly neurodivergent people and even further, anyone who does not fit the social norms of a typical student, whether that be due to physical or mental health, neurotype or disabilities. I’m not here to blame the teachers, or any individual staff, who do an incredible job on a daily basis – like my mum. I’m here to say the education system system is failing the hundreds of thousands of autistic people in education here in the UK today.

I effectively dropped out of school – attending four half days (three/four hours each) was an absolute miracle. I think in the time I wasn’t attending, the only time I got 5 days in a row was when I had exams. Normal for me was two or three of those, regularly though, it could just be one. That was for about the final year and a half of my compulsory secondary school education. I would come home from those days – sleep, cry, have a meltdown, if not, at the very least, lay down in a dark room for a couple of hours, dreading the next day. I was suffering autistic burnout, feeling utterly depressed and struggling with two anxiety disorders. I couldn’t leave the house, let alone attend my education. My incredibly huge love of learning died for that period. The school system did not fit my autistic needs and I did not have the neurotype for its “one-size-fits-all” philosophy.

This is a weird scenario, right? Surely, it’s just me – at the very least a minority? No.

I know of so many people, autistic people, going through the same struggles as I did. And let’s be perfectly clear – my status as a ‘good’ student with parents willing to fight for me meant I had accommodations made, like half days and a lack of serious consequence from missing school. But others don’t. I know of autistic people who are homeschooled to avoid the anxiety and chaos, I know of autistic people trying as hard as they can to just enter the building and struggling and I know of autistic people who’ve pretty much given up on change, and subsequently their education.

Just living in a world that not made for you is tough enough, but trying to be educated in a system that is so clearly not made for you is a hundred times harder. Schools are too loud, too busy, too complicated, too fast, too chaotic and too full of people. And you’re too small, a singular voice that needs everything to change but the school system can barely imagine the resources, let alone implement them, to help you.

It’s an inflexible and inconsiderate system that I know irritates those – teachers, support staff, teaching assistants and so many more – within in it. They don’t have the power to change this system, despite its clear failures of so many. Some autistic people gain access to accommodations  – which is amazing – but the lack of funding to support the future of a huge community means you have to be deemed to be ‘autistic enough’ first. Autistic people are considered to be ‘outsiders’ and ‘strange’ by most of the world, and despite the unanimous hatred of these terms from autistic communities, when it comes to schooling we’re left alone and deemed to be unworthy of additional support, like any other students. The world, the system and the government should not be using our identities in anyway they want to. You can’t decide we’re unworthy of support and then see our failures as inadequate teaching. You can’t put us in a classroom made for neurotypicals because it’s rare for autistic people to get into specialist education and see us as an issue when we can’t cope and have meltdowns. You can’t pick and choose when you see us as autistic.

The staff within schools try their hardest to help us with the limited time, energy and resources they have and I thank every person who’s tried to accommodate us with what they have. As I said, my mum is teacher and I have incredible amounts of respect for how they try to help us develop as individuals. But because they system is set up for neurotypicals – and we’re seen as a problem from those who’ve never met us but give orders to schools to ensure we achieve everything in inadequate environments for us – the overall impact on autistic people struggling to remain in education is still huge, because the education system – the government and not the teachers – is failing us.

A Somewhat Incoherent Ramble About Struggling

We all struggle sometimes – and that’s completely okay. To admit it, is in fact, even better. But that doesn’t make it easy to do so.

Things have been rough. My physical health is not great and, as always, it’s taken a toll on my mental health. Being hypersensitive to pain doesn’t help, either. It’s weird because this time of year is usually when my mental health gets better, but it’s got worse. I know it’s just stress. I’ve got a lot of assignments to do and everything’s become a bit too much. I walked out of college the other week as a way to try and cope, I’ve been getting home from college and laying in a dark room for a while, crying and melting down more often and I’ve ordered a weighted blanket to help me sleep better, if that’s any indication of how things have been going.

My biggest struggle at the moment is feeling that I’ll burnout again. It’s maybe my biggest fear. I can’t go back to feeling scared to leave the house and leaving my bed a couple of times a week. I’m not there. And I won’t let myself be there again. But it doesn’t change the fact I’m scared.

I think there’s something scary about admitting to struggling when you’re autistic. We’re often told that our lives are struggles and protesting against this becomes normal. It’s ridiculous but I fear that people will change their ideas about me if I say I’m struggling. Something about protesting that I don’t need curing and that I’m never going to be ‘normal’ makes me feel like I shouldn’t say that I’m struggling.

And that’s exactly why I should.

Being honest about this is important for me, but not just internally. Admitting to myself that I’m not doing well is difficult, but telling anyone else is harder and I wish it wasn’t. The stigma around mental health and autism is huge, and helps no one, and combining them together feels hard and scary to break. It’s not though. That’s why this post is shorter and less coherent than usual, but hopefully, I’ll be back on it soon.

I’m not completely okay, and that is completely okay.

Ableism and Autism

I’ve been writing a lot of posts recently but within each post I get to a point where I stop and pause. There’s one topic that reoccurs within discussions about autism and I’ve not felt ready to go into it fully. I think it’s finally time I do, however, so here it is: my post on ableism.

Ableism is simply discrimination in favour of abled people. Strangely enough, though, we don’t see it discussed and portrayed in the same way things like racism, sexism and homophobia are. This isn’t to say that ableism needs more attention because it’s worse, just that it’s so erased that many people don’t even know that it has a name. “Racism for disabled people” is one of the one’s I’ve heard a lot.  As I said in a previous post, autism is described as a neurodevelopmental disability, thus prejudice and discrimination against autistic people falls into the category of ableism. Obviously, ableism is something that many different disabled people face but as I am an autistic person with no other disabilities, I can only talk about it from my own viewpoints and the viewpoints of those within the autistic community.

Ableism doesn’t just come in the form of bullying, although that is something a lot of autistic people face. Part of ableism is the names we’re called by other people for not processing something quickly or stimming in public, but it spreads a lot further than that. Ableism isn’t just the “you can’t play with us because you flap your hands” comments we see on the playground. It spreads a lot deeper than that, even into the language some people use on a daily basis on issues surrounding autism and autistic people because they think it is acceptable.

Functioning Labels

A key example of this normalised ableism that everyone has heard of is functioning labels. This is when autistic people are divided into high functioning and low functioning. Functioning labels are inherently flawed for many reasons, but largely due to the fact they’re unrealistic and somewhat ridiculous. These flaws can be summed up in one simple tweet that I’ve found:

Image result for functioning labels tweet
Credit: Ellen Murray’s Twitter

I’ve heard and seen so many conversations, online and in real life, that use these labels, so much so that I can confirm this tweet is correct. I remember seeing a post, not too long after a diagnosis was suggested to me, from a girl who was very annoyed at autistic people on the internet accepting themselves because her brother had what she called ‘real autism’ – he was what she considered ‘low-functioning’, and these ‘high functioning’ people on the internet didn’t understand the struggles her brother faced. This girl was not a professional, but we see this in professional communities as well. I’ve been told, from a simple glance, that I couldn’t be autistic because I didn’t seem autistic. I’ve heard ‘you’re a pretty and intelligent young girl’ as reasoning more than enough times – “used to deny support”.

Just because I didn’t fit the media-influenced idea of autistic people – a young boy with headphones who doesn’t make eye contact and cannot verbally communicate- I was one of two things: 1) not autistic or 2) high functioning. The amount of people you can find online who’ve plucked up the courage to tell people that they’re autistic – putting themselves at the risk of verbal, ableist abuse – who get the response “oh so you must be high functioning” is ridiculous. What’s more ridiculous is how this is seen as a compliment. How is it a compliment that you’re detaching that person from people just like them because they don’t quite fit your stereotype?

On the other end of this, we see people who are ‘low functioning’. One of the – many – problems with functioning labels is that there so subjective. Who fits into what category? A seemingly common opinion is that those who can’t communicate verbally nor take care of themselves to a neurotypical standard are ‘low functioning’ and it’s ridiculous. I’ve seen the ableism here as well. Non-speaking doesn’t mean unworthy of a voice, not at all, and someone who has a far better perspective of this than I do is Amy Sequenzia, a multiple disabled, non-speaking advocate who can be found here.

The easiest way to put it is that we’re all autistic and fortunately some people in the medical community are listening. A common diagnostic criteria, the DSM-5, removed things like “Pervasive Development Disorders”, “Asperger’s Syndrome” or “Autism Disorder” using “Autistic Spectrum Disorder” instead. It has been argued – and I must say I agree – that “Classic” autism and “Asperger’s” aren’t far from functioning labels at all. They’re used to distance autistic people from each other, and put us into boxes that aren’t there.

I’m about to ruin this idea of a linear spectrum that we can find all over the internet and in real life. I would like to clarify that this:

spectrum

is not the autistic spectrum. This is ableism. 

Functioning labels are a construct used to divide autistic communities, not a scientific fact. There is no such thing as ‘severe’ and ‘mild’ in the same way that ‘high’ and ‘low functioning’ don’t exist.

The autistic spectrum is a circle. Sometimes I have executive dysfunction – where I physically cannot plan out the steps for

Image result for autism spectrum
Credit: Rebecca Burgess’ comic, found here

a task and complete it (something I do plan to talk about at some point) and sometime my executive functioning is wonderful! Sometime you will not be able to make me shut up, and others I’m completely non-verbal.  Sometime I remember to eat, and other I don’t. It’s a spectrum that varies from person-to-person, day-to-day.

Functioning labels are just a day-to-day, seemingly accepted form of ableism. They’re not labels autistic people came up with, they’re things that oversimplify a complex neurological variation and have no real definition.

Autistic people are promoting positivity as a response. Yes, I have meltdowns, struggle with things neurotypical people can do and experience sensory overload but that doesn’t mean autism is a negative thing. Somethings are are struggle but that doesn’t mean I should be denied the self love I’ve spent years working on.

Cure Culture and Awareness

Unfortunately, there are so many more forms of ableism I see in regards to autistic people. One is cure culture. I touched on this in my language preference post, where I discussed how an accepting society is what creates issues for disabled people. Basically, because we – disabled people – struggle, we should be cured. Because we need accommodations, we deserve a cure. I don’t want to be cured because if you take away everything that makes me autistic, I’m not me. If you help me thrive as an autistic person, I’m me, without the struggles. As I said in my Language: Identity vs Person post, “If I were to take away her [my sister’s] sensory experiences and subsequent responses, her likes and dislikes, her routines (or lack thereof), the way she moves, the way she thinks, how she communicates and how she acts socially, she wouldn’t be my sister. She wouldn’t be herself, with the defining things that make her her. This works with anyone, take away all the above things, take away those fundamental parts of who someone is and they’re not themselves.”

Sadly, one of the world’s leading autism ‘charities’ promotes this agenda. Thankfully they do not have much hold here in England but I see how their words influence people over here. I present to you the cure culture promoting, autistic people ignoring hate group that disguises itself as a charity: Autism Speaks. You may not have heard of them but they promote a lot of ideas I’m against. I’ll bring you a short summery here but Sabrina from strangerdarkerbetter.com posted a great collection of resources that can be found here.

Simply, they promote fear. Autism, to them, is a tragedy that should be cured because of the burden it places on autistic people’s families. Not the struggles autistic people face, but their families. To them, we are not proper human beings. 13% of their money goes into a cure that autistic people don’t want, though of course they don’t know this because despite being called Autism Speaks, they do not listen to us. Functioning labels, to them, are a convenient silencing tactic – “you’re too high functioning to have these struggles” or “you’re too low functioning to understand”.

44% of their money goes towards advertising. They use the puzzle piece logo, something that is rejected by the neurodiversity movement. It symbolises the ‘mystery’ autistic people are, which is not true. I’m not a mystery if you listen to me, but Autism Speaks don’t listen. They also use the colour blue, something said to represent autism because autism is a ‘boys’ thing, apparently. They also promote awareness throughout the year, but mainly in April, their “Autism Awareness Month”.

As a community, we’ve rejected this month and have reclaimed it under the name “Autism Acceptance Month”. Something I’ve typed out before another post is the comparison to illness. Autism is a neurological variation, not a disease like cancer. In this context, we raise awareness for cancer so people understand what harm it can do. Cancer patients aren’t rejected by people for having cancer because it’s not fundamentally who they are. Autistic people are rejected for being autistic because it’s fundamentally who we are. We don’t need awareness, people are aware of us, they just don’t want to listen to us. We need acceptance.

2014-autism-speaks-pie
Credit: Love Explosions

As this graph shows, less than four percent goes to helping autistic people. Four percent. This is why many autistic people – including myself – label it a hate group. Nearly 44% to their fearmongering campaigns, less than 4% to helping the people they’re claiming to speak for.

(Amythest Schaber also has a video in her – incredible and informative – Ask An Autistic series dedicated to the discussion of Autism Speaks)

 

Infantilisation

Another form of ableism is the infantilisation of autistic people. Quite often, saying “I’m autistic!” means that we’re seen as less of a person, and treated like children. I’m a sixteen year old autistic person, you don’t need to coo at me like I’m a baby, I can assure you. I’m autistic and I struggle with somethings you might find easy, but that doesn’t mean I’m a child.

Mental ages play into this as well. They are often seen to be just as ableist as functioning labels. I can’t say I’ve ever personally experienced them used in regards to myself – thankfully – but a blogger, Cyndi from butterflyinthewell.tumblr.com has. She says “I was a victim of the ‘mental ages’ thing that autistic people get slapped onto them. The psychologist who diagnosed me told my mom ‘mentally and emotionally she is always going to be an 8 year old.'” and goes on to say “I’m nearly 37 years old. I was 8 in 1988 and I stopped being 8 from 1989 onward.”

(I felt this topic, especially Cyndi’s words on it, were personal and not my place to share without prior consent so I did seek permission first! Thank you for letting me use them!)

These mental ages aren’t helpful, they just contribute to the idea that autistic people aren’t human beings in the way neurotypical people are. We’re not children in the bodies of adults. We’re people. Age for us is the same as it is for neurotypical people – the amount of years since we were born.

More Ableism

Ableism, in regards to autistic people, also extents further than this. We have anti vaxxers, who pay attention to a person who is no longer a doctor and his debunked research, and would rather have extremely ill children instead of an autistic child. We have violence towards autistic people, for no reason other than the fact they’re autistic. We have so many forms of ableism.

I know this post is extremely negative but it’s an important one that a lot of people won’t see the discussion on. There are a lot of sources on this post to other websites so you can find out more about what I’ve been talking about.