Silencing his voice

Those who know me know that I have recently moved to employment out of the education system because I found myself completely disillusioned with education, particularly the provision for Special Educational Needs where I predominantly worked during my career in education. I could write any number of posts discussing various issues I saw during my time in schools – and over time I probably will – but I thought I would start with one that has bothered me ever since I witnessed it.

One student in Key Stage 2 had recently had a Cochlear Implant. He had been involved in the decision making process with his parents and had said that this was what he wanted. The procedure went ahead with no complications and he returned to school. Part of his programme of adjustment for his cochlear implant was to complete daily listening based activities. I was not involved in this so don’t know the exact details of what these were, but I do know he worked with one of the male teaching assistants for half an hour each day to complete them. That same teaching assistant also supported him in class as the student was still adjusting to the cochlear implants and I guess hearing everything in a different way.

Then the school decided to shuffle staff around (a subject on which I could fill pages of rants) and a new staff member was assigned to work with the student. One day I was working in the room where this student went to have his meeting/assessment with the specialist assigned to him. The new teaching assistant was present. I wasn’t really paying much attention to them – having my own work to do – until the student raised his voice, clearly frustrated.

“I’ve already told my parents I don’t want to go into a Resource Provision and I don’t want to have a teaching assistant all day either!”

Whilst I was sitting there being quite impressed at the young man’s confidence in self-advocacy, the whole situation was made altogether more uncomfortable by the professional’s response:

“Now you don’t mean that, think about how you’re hurting Miss’s feelings by saying that. It will be good for you to go to a Resource Provision. We’ll talk about it with your parents”

I regret now not turning around and saying something to that professional. I know that being autistic makes it hard for me to get involved in any social situation, let alone a potentially emotionally charged one, but I still get moments where I feel like I let that student down. I did go and speak to the Higher Level Teaching Assistant about the possibility of slightly altering the deployment of the student’s TA so that he didn’t feel lie he was stuck to an adult; and I did speak to the Learning Mentors about how his voice had been ignored. I still feel like I should have said something to the professional though…

I worked hard to make sure the “voices” (used figuratively) of the non-verbal, autistic students I supported were heard, and it really bothered me to see this professional completely brush aside the views of this young man and patrionise him at the same time by telling him he didn’t mean what he was saying. This student knew what worked and what didn’t work for him. He didn’t want to be placed into a Resource Provision unit in Secondary school and he wanted his Teaching Assistant contact time reduced – why was it so difficult for that professional to acknowledge his views? Acknowledge his voice? Respect what he had to say as a valuable contribution to his ongoing provision?

If the voices of those who are verbal are so easily ignored despite the recommendations from the SEND CoP (DfE/D0H, 2015), then what chance is there of the views of those who are non-verbal being listened to and respected?

Interoception and 2L bottles of water

Being hyposensitive to your interoception is pretty damn awful. Or at least for me. I don’t know how anyone else feels about it – for me it’s pretty damn awful.

It’s not a very well known sense, although now we know a bit more and vestibular and proprioception, interoception is getting a bit more attention. Basically interoception is “any sense stimulated from within the body”. Now there’s a bit of undecidedness about whether things like pain or heat response should be covered under this, but since they’re stimulated by something external I tend to use their specific terms, nociception and thermoception respectively.

Like most of the senses, people with sensory processing difficulties can be hyper- or hypo- sensitive to one or more areas of interoception. I’m on the more hyposensitive side of things. This means I don’t pick up on the sensory signals that indicate things like the early or mid stages of feeling tired, thirsty, hungry, or needing to use the bathroom. From what people without hypo-interoception inform me – these are gradual processes and they are often aware of even the early indicators. I tend to pick up the senses once they’re in the late stages. So when I haven’t drank for hours and hours, when I haven’t eaten for days, when I really need to go to the bathroom in the next few minutes, and when my head is about to drop and I’m going to fall asleep on my keyboard. It’s not a lot of fun.

This post was prompted because I was sat reading when I suddenly became aware that my lips were very dry. With that realisation I slowly noticed that the words I was reading were also swaying on the page, and that I was a bit shaky. It didn’t feel like illness, and after a short while thinking it occured to me that I had not drank any fluids for over twelve hours. I need a lot of water to feel well – when I’m working or out and about I usually drink between 4 and 6L of water a day. I carry around a 2L bottle of water so I am continually reminded to drink.

So how did I manage to forget?

Because I’m between jobs. Like many autistic people I cope much better when I have a routine, and for me employment is an important part of that routine. Without a job and the structure that comes with that, I lose a lot of that routine which leads to issues with all my other routines that I so carefully set up. Thankfully I’m due to start my new job in the next week or two depending on the paperwork processing speed – so until then I’ll just have to make due with a post-it note or alarm on my phone to remind me to keep drinking.

Being autistic does not necessarily make you an expert on autism.

It’s a phrase that gets thrown around online a lot. Originally it was “the only people who can be experts on autism are autistics” (I disagree with that one as well but at least the wording is more reasonable) and somewhere along the line it ended up as “autistic people are experts on autism” – a much more concrete statement that is largely untrue.

I can’t begin to count the number of autistic people I’ve seen leave comments on threads and forums online that made me realise they actually know very little about both the full spectrum of the disorder and of the history of autism. From the individual who believe that Autism Speaks came up with the puzzle piece symbol to oppress autistic people (they didn’t, it was The National Autistic Society in 1963 and they had much more benign reasons for choosing a puzzle piece), to the people who believe that Asperger’s Syndrome was created for the sole purpose of appeasing “white, middle class families”, to the commenter who responded to a question about differentiating P.E lessons for autistic students with “I don’t see why you’d need to change anything, just make sure it doesn’t get noisy” (assuming that hypersensitivity to noise is the only possible problem that autistic people could have with accessing a P.E lesson), to the person who claimed that because they knew lots of autistic people who were married and in successful jobs that meant that the majority of autistic people are also in that position.

Having a disorder does not automatically make you an expert in that disorder. It doesn’t even necessarily make you an expert in how your own disorder presents. I’m autistic and I only just worked out that if I wear noise-cancelling headphones during lectures (with no music) then the whole experience is so much easier and I am so much more engaged. When I was first diagnosed I had no idea which of my issues came from sensory problems and which were executive dysfunction – I have now spend hundreds of hours reading and working widely in the field of autism, and I’m still not an expert or even anywhere near. For all the complaints many autistic people make about how non-autistic people make assumptions about autism, I’ve seen just as many autistic people who have equally wrong assumptions about autism.

It’s okay to be wrong or misinformed, I know I have been many times, but the key here is to remain open to the fact that you can learn from a range of sources – autistic or otherwise – and never decide that you are an expert who has nothing more to learn. There’s always more to learn.

People getting angry over people earning money?

I must admit I am quite baffled by two instances I’ve seen in less that 24 hours where people seemed (to me) to get irrationally upset about other people earning money for the products they make. One was over an app – someone in a thread had asked whether the app was worth subscribing too and a few responders seemed very angry about the fact that creator of the app was earning money from the app. They seemed to have this internal standard of what was an appropriate amount of money for someone to earn from this type of thing, and after that amount it was unreasonable.

I also came across a post where the The Girl with the Curly Hair Project (so Alis Rowe) was defending the fact that she earnt money through the TGwCHP – explaining that it wasn’t a charity but a social enterprise. Which got me wondering, who made her feel like she had to justify herself in the first place? She is providing products and services, and should be paid for those products and services. If you don’t want to access them – then don’t pay for them.

I’ve seen it online in a few other autism forums and threads as well – although never quite so explicit – from both families and autistic people. That apps should be free, resources should be free, books should be free (I should be clear here – I am not referring to any services that should be covered under insurance or by the NHS and they are somehow trying to get out of providing – I’m talking about things provided by individuals or small groups of people). People complain about not being able to do x, y or z; then when resources or books are suggested turn around and say they’re not paying for it.

I’m not going into the debate about the cost of resources for special educational needs or disabilities in this thread – we can all agree that a lot of them are far too high and are exploitative in price – but where did this idea come from that we should receive products and services for free? People wrote those books, made those resources, designed and drafted and spent a long time creating these items. They are as entitled to ask for a price for it as you are entitled not to buy it. The maker of the app I mentioned is well within his rights to ask for money for the app that he spent a lot of time making; just as Alis Rowe is well within her rights to charge for the products, resources, and time that she spends on her social enterprise.

Maybe it’s because there are so many things available for free (think of all the free apps that exist or of all the blogs offering advice for free) that people seem to have this skewed idea that they are entitled to things for free? Once I get around to finishing writing my books, you can guarantee that I’m not going to just give them away for free – because I spent a lot of time and effort to make those products so I will feel more than justified in charging what I consider to be a reasonable price for them. Just as anyone else will be completely justified in choosing not to buy it.

Sometimes motivation doesn’t work

I read something about this last week. If you’re always waiting for motivation to do something, then there’s a good chance you’re not actually going to get around to doing it. Motivation can be and often is fleeting – if you only do what you need to do when you’re motivated, you might find you don’t do much at all.

Like many others on the autism spectrum, I have difficulties with executive dysfunction and I’m prone to perseverating on a particular area (particularly my special interests). This does not lend itself well to getting things done. So I have a number of visual supports and strategies that keep me focused and on-task. I use apps (I’ll talk about some in later posts) to keep track of things I need to do on various days and my partner uses a SCERTS based task board to let me know what household tasks need doing. I then have a reminder on my phone that directs me to take these tasks and break them into mini-goals. The mini-goals then go on my whiteboard right above my computer, where I’m most likely to see them and be reminded:


Next to it (the red thing) is a timer – set to 5 minutes at the moment but usually set to 10 minutes. That keeps me on track. I can play games or read or do whatever it is I actually want to do – but when the beeper goes off, I have to choose something from the mini-goals list and do it. This works really well for me, especially when I am struggling to find the motivation to finish off my university essay. It keeps me focused and going back and working on it.

The fear of change

I was far more successful at interview than I thought and in the time since my last post, I have accepted a job offer to work for a charity helping young people and adults with autism and learning difficulties to access public transport and the community.

Now it’s probably unsurprising given the core issues that many autistic people experience, but the idea of changing from a job that I was “comfortable” in (although not necessarily happy) to a completely new environment and job role.

I can feel the anxiety just beneath the surface – kept away by my focus on essays to write. The problem is I can’t quite focus on the essay either. There’s all these thoughts about my job and my future in education that distract me if I don’t force myself to stay focused. I thought maybe it would help to do some reading on how to help autistic people with learning disabilities access public transport.

There’s not much on it really. I was a bit surprised to be honest. I know there’s always complaints from autistic people online about lack of resources – but I know that there are actually quite a few books out there for autistic adults because I’ve got them. However, books for adults with autism and learning disabilities, and how to help them access the community and public transport? Not so much in the way of books or resources. I’m starting to realise that for all the complaints you find – there are a lot more resources for autistic children, young people and adults who would have traditionally been considered “high-functioning”. For everyone else? Not so much.

I suppose after I have some experience perhaps I will have to fill that gap and write some resources.

One interview is hard enough…

There is a part of me that wonders whether anyone really sells themselves well in interviews – and whether it’s about time we tried to move away from this very rigid idea of interviewing to fill positions.

I find interviews difficult – no surprise there given the fact that I can’t read body language or tone of voice, I struggle to “read between the lines”, and my eye-contact is practically non-existent. So it was some kind of potential disaster for me to have two interviews scheduled for the same day – within about half an hour of each other.

Even though I am now open about being autistic during job interviews, and how this affects me (trying to find positives as well), I always wonder how much people actually understand and how much they’re guessing. Very few jobs actually want to straight out ask specific questions (although one today did and it was brilliant – very straight-forward and autistic friendly) so it’s hard to know whether people have the right understanding.

What I do know is that many autistic people find interviews as difficult as I do – and given that unemployment rates of autistic people is very high, I wonder if it’s about time that companies start to consider alternatives to the traditional interview. I know some jobs offer trial days – I’ve had a few myself – but these can come with the stipulation that it’s unpaid – which sometimes means they just get a day of free labour. I’m not quite sure what the solution to this is.