Let’s just ignore it…because that always works so well.

Stepping out of the rantings about autism for a while, I had a frustrating moment earlier in the week concerning the gay community. There have been a few studies now that have indicated that domestic abuse is markedly higher amongst lesbians than any other combinations of partners.

No-one but those with an anti-gay agenda seem to want to talk about it. I watched as someone on a popular social media site was downvoted for even suggesting that it was an area that warranted additional studies. I’ve seen others just be shut down and called homophobic for bringing up the increased odds. The thing is, not talking about it is not going to make it go away anytime soon.

At university, I knew of two other women who were being domestically abused by the women they were dating. Neither situation involved physical harm, so the other people who knew them just accepted it as part of “dyke drama”. My partner, prior to meeting me, was in a domestically abusive relationship with a woman – what had started as two awkward sexual liaisons was now a “friendship” with all the hallmarks of an abusive intimate relationship. When my partner started going out with me, that escalated to physical abuse. Which was the point at which something was finally done.

Domestic abuse needs to be talked about. Maybe the studies showing this data have methodological flaws, or may there’s confounding variables that mean that the statistics aren’t as straight-forward as they seem (which is usually the case for statistics), but I am sure that some people are reluctant to talk about this topic because it looks like yet more ammunition for homophobes to berate and condemn our relationships – but the abuse won’t stop just because no-one is talking about it.

“I don’t think low-functioning autism is true autism”

Yes – I have read that (more than once although the wording was slightly different) online from an autistic person.

The endless battles over functioning levels or different types of autism do not seem to be going away any time soon. It’s understandable because it is an incredibly difficult concept to understand. There were times when I was supporting students that I found it so hard to understand how we could share a diagnosis of Autism Spectrum Disorder. Combine that with research that seemed (at the time) to indicate identifiable differences in Aspergers and Autism and PDD-NOS, and it’s easy to understand why just lumping them all together under one umbrella term in the DSM-5 hasn’t gotten rid of the intense discussions.

Statements like the one I put in the title are not that common – but the fact that they exist indicates that not everyone is happy about the merging into a single diagnostic terminology. This particular statement actually appeared in a thread where some people were trying to argue that autism was an amazing, positive experience for everyone. Understandably some people disagreed. The discussion moved (as they often do) to the comparison between “high-functioning” and “low-functioning” autism – and out came the line “I don’t believe low-functioning autism is true autism”. I’ve seen many lines of argument within the autistic community – but not often do I see people effectively “undiagnosing” huge numbers of people from the spectrum just to drive their point home.

Whatever terms you do or do not want to use, autism is a spectrum. Sometimes or for some people, it’s a positive thing – little more than a difference in perceiving the world, for others it’s a negative thing that affects every part of their lives and makes them miserable. You often see these two different groups of people arguing about this very topic on autism message boards. Then there’s everyone in between who tend to avoid getting involved in the arguments.

You don’t get to tell people how they experience their condition, and you certainly don’t get to ignore a huge proportion of the autistic spectrum just to make your point.

Cuts, cuts, cuts…

I imagine that a similar situation is playing out in other countries around the world right now – but this week for me has been a week of watching the funding for services for people with special educational needs or disabilities get cut.

I left my job working in a school because I could no longer cope with the disaster that was the special educational needs department. Even with distance I am kept up-to-date with the chaos through my old colleagues (don’t join a WhatsApp with old work-mates if you want to be kept “in the dark” about this kind of stuff). I read as teaching assistants were cut, resource budgets were cut, as students were reassigned again and again. I read about students I used to work with displaying increasingly disregulated behaviour – lashing out, biting, hitting – as their whole academic world was restructured around them. I read about teaching assistants being told they were now responsible for two or three students with moderate to severe special educational needs. I read about old colleagues getting sick, getting hurt, developing mental health problems…

Then in my current job I watched it from another angle – I watched as the news unfolded about projects designed specifically for people with disabilities being cut to make room for more “relevant” work. I watched as the organisation released blog posts and twitter posts. I realised that the projects for those with disabilities was being cut because they didn’t bring with them big headlines; they didn’t get the kind of attention the organisation wanted.

It doesn’t take much searching online to discover story after story about the failings of the SEND system; about the cuts to services and projects designed for people with disabilities. If you really want to you can find pages of how schools are at breaking point – and how this is failing students. What makes this even harder to deal with is the fact that the UK is actually quite far ahead of many other places worldwide when it comes to special educational needs and disabilities – and then you hear stories about how much worse it is in those other places.

I saw things that made me angry during my time in special education – I dread to think how much worse things will get if these cuts continue.

Double standards confuse me…

I came across a post a while back that I was reminded of earlier today, that discussed various different trackers or alarms to alert people when people with autism or alzheimer’s or general dementia were at risk of wandering. The post itself was not what interested me the most – rather the comments in response to it were.

Most of the comments immediately jumped onto the idea that these gadgets would be misused by abusers, that people (particularly autistic people) who wander are usually trying to get away from abusive situations, that these gadgets were terrible and anyone who put one on their relative was a monster.

Right – so the response were an over-exaggeration absolutely but you can see the potential amongst a small group of people to abuse a gadget such as this.

My issue came with the fact that I had previously seen the same commenters defend Facilitated Communication as a completely valid means of communication that should be accepted – quoting ASAN’s “assuming competency” stance on the area of Facilitated Communication.

Yes that’s right – they were outraged by the existence of a gadget designed to prevent wandering which (as far as I can find – send me any news stories if you know any) has not been associated with any allegations of abuse, but are positively advocating for a disproven method of communication that not only has no empirical evidence going for it, and has been shown time and time again to almost always be the prompter doing the communicating (most studies come back with 100% rates for this), but has also been linked to false allegations of abuse, justifications for sexually abusing autistic people, and the murder of at least one child.

It’s good to be critical and think logically about the potentials for abuse – but to dismiss one thing simply for having the potential to be abusive and being completely accepting of another thing that has been proven to be abusive isn’t just hypocritical – it’s ridiculous.

Where are all these resources?

I’ve seen comments online a few times that basically say the same thing “There are loads of resources for low-functioning autistics/autistics with intellectual disabilities and nothing for the rest of us”. That’s usually then qualified by them not liking functioning labels and so on but you get the general idea.

What I want to know is where are all these resources for autistic people with intellectual disabilities? In my experience, there aren’t that many of them – particularly when it comes to things like books, lesson plan, and curriculum resources.

For the sake of this post, I’m going to use the three support levels for autism in the DSM-5 even though they’re not particularly useful for individuals, they serve the purpose for classifying books:

Support Level 1: There’s a lot of books and resources here for students, especially primary school students. There’s also a lot of books and resources aimed at this support level for interventions and strategies. There’s less for teenagers and for adults but you can find a range of autistic authors offering advice aimed at this support level.

Support Level 2: Again, a reasonable amount of books aimed at supporting students and children. Quite a lot of books on visual supports and strategies. This area is quite short of books for autistic teenagers and adults though. There are some autistic authors offering advice at this support level but it’s significantly less than support level 1.

Support Level 3: Very little in terms of books or resources for students. I looked for them for a long time. Books like Tasks Galore and the Intensive Interaction books definitely are useful for this support level, but beyond that it’s quite limited. Strangely enough this support level has a few more books for teenagers at level 2 – and more books on sex education and autism from what I’ve found (of course, SRE is vastly under-resourced so when I say more books I pretty much mean 5 or 6 books instead of 1 or 2). Almost nothing for adults.

When these people protest that there’s loads of resources and focus on “low functioning autism” and nothing for everyone else, I have to really wonder if they understand the full scale of the autistic spectrum. Maybe that’s the issue with the spectrum? The idea of a spectrum is too limited (this we know). All I can say is that when you’re supporting an individual with severe sensory issues, who struggles to functionally communicate, is greatly impaired in receptive communication, has enormous difficulties in fine and gross motor skills, will likely never engage with the National Curriculum (for students), and will need round the clock care more most if not all their life…then you do kind of wish that these claims of “loads of resources” were true. Unfortunately it’s not and people who need help are not getting the help they need and deserve.

Lack of empirical evidence

There are some places online within the autism community where it would appear that if you don’t follow that particular group’s hive mind towards certain methods like Rapid Prompting Method – you might as well just not go there.

For those who don’t know, Rapid Prompting Method is a method of communication devised by Soma Mukhopadhyay that helped teach her autistic son to communicate. It typically involves the use of letter board, keyboard or ipads. So what’s the problem? Well – it lacks any empirical data for actually working and the studies that have been done on it are few and far between (not to mentioned largely associated with the HALO Centre where RPM and Soma are based -you see the conflict of interest I’m sure). If you Google around you can find a number of blogs which make the claim that they are written independently by people who learned to type using RPM. That’s fine, but it’s not exactly evidence because I could upload a post telling you all that I am non-verbal and learn to communicate using RPM – it’s easy to lie on the internet, people do it every day. There are a few videos as well – and these are much better. Of the range of videos I’ve seen there are perhaps half that I am happy to accept as evidence of independent typing? A lot of the videos that I don’t consider good evidence involve a person holding and moving a letter board around as someone points, and many of those have multiple instances where the individual communicating points at a letter or multiple letters that aren’t read out before landing on the “right one”.

So dubious evidence at best, but it’s certainly got the potential to teach non-verbal people to communicate via pointing or typing. The other issue many other people have is with the similarities between RPM and Facilitated Communication, the latter of which has been linked to a wide range of abusive incidents and false allegations. It certainly seems a bit more difficult to manipulate what a person is communicating with RPM, but it’s not impossible. Given that a number of autistic people have been abused as a result of FC, and at least one boy was murdered, you would think that a cautious and collected view of RPM would be the norm?

Well – it is mostly, but there are absolutely some parts of the autism community who are not only adamanant that it works but who figuratively tear apart anyone who displays any kind of doubt over it. There’s always that same phrase of “assume competence”, and you know what – that’s a nice phrase but it doesn’t always work. Say for example we get someone using RPM who expresses a desire to be involved in a sexual relationship with the person who helps them communicate (an incident that has occured in FC), I want to be damn well sure that the person communicating is the person who thinks and feels that before I’m going to be okay with it.

For all the arguments from the autistic community about respecting everyone on the spectrum, when people argue so aggressively and rigidly about how RPM should be used with all non-verbal people I can’t help but feel like it’s saying that people only have value if they can produce long pieces of prose like Tito Mukhopadhyay and Ido Kedar. Everytime you bring up the fact that not everyone is going to be able to access the National Curriculum or will take a very long time to communicate past the basics of “I want” there’s always someone who crops up and says “Yes but it’s really hard to test the capability of autistic people, look at RPM and what the people who learnt to use it had to say…”, that’s great and everything but it sounds like you’re trying to brush off the fact that some autistic and/or non-verbal people also have severe or profound learning difficulties.

RPM isn’t proven, and even if it does work for some people it’s not going to work for all autistic people. It also needs a damn sight more empirical data before I accept it as a reliable method.

Positive Stereotypes

There seems to be a slight shift recently in the types of news stories involving autistic people. Granted there are still a significant number that focus on everything negative associated with autism, but there’s a different type of article beginning to make an appearance.

The stereotype of autism and STEM.

This upsurge could perhaps be partially attributed to Neurotribes and the discussions of the Silicon Valley that came out of it. Perhaps it’s something else entirely. Whatever caused it, there are now a number of articles about how amazing autistic people are in the STEM fields and how it would serve companies well to follow in the vision of Microsoft and hire more autistic people. Quite a few commenters online have argued that this is a good thing and how we as an autistic community should be supporting this new and positive stereotype.

The problem is, it’s only a positive stereotype if you happen to even vaguely fit the stereotype. So for all the autistic people who don’t excel in STEM subjects, what’s going to happen if this stereotype takes hold? It’s going to be the same thing of people expecting you to be a certain way – like the Rainman problem but from another angle. Other minorities do not seem especially fond of positive stereotypes associated with them – so I don’t see why the autistic community should be either.

There seems to be a real problem with views of autism (both within and outside of the autistic community) being one extreme or the other. Either we seem to only focus on autistic people who have great difficulties in every aspect of daily life and ignore everyone else. Or we focus on those who are in good STEM jobs and who are successful in their daily lives (with little focus on the difficulties they have) and ignore everyone else. So the people in the middle get ignored a lot either way. I don’t think moving from one stereotype to another is ever going to be a good thing, and I think the focus should remain on moving forward in showing just how diverse the autistic spectrum is.

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.