“Unlike you, my autism is inside…”

I have had this said to me twice in the past year (and also a variation of it, though in the third instances the individual had ADHD and was talking about how his ADHD affected him inside). I always wonder what the alternative insinuation is… That my autism is spilling out? That my autism is outside autism?

When I stop and rationalise it, I tend to think what they’re saying is that I don’t (can’t) “mask” my autism. Which is true – I can’t so I don’t expend any energy trying.

That on its own is a kind of fair point, what makes me annoyed is the follow-up.

The first autistic person went on to talk about how lucky I was that my autism wasn’t all inside and how they had suffered bullying because no-one saw their autism. That it must have been so freeing to “be allowed to be so outwardly autistic”.

Does anyone really think that secondary school kids don’t bully children who are “outwardly” autistic? And to tell me I’m lucky? The whole interaction left me feeling uncomfortable.

The second autistic person is a colleague who, after informing me that her autism was “inside autism”, told me that my autistic behaviour was distracting and proceeded to talk about how different things I did were difficult for her “inside autism”. She had known me for less than an hour. As well as being utterly baffled by this use of “inside and outside autism” (some of the strangest terminology I’ve heard anyone use), I was frustrated that yet again someone felt it was okay to point out all the issues they had with my autistic behaviour. She later complained to my line manager about my lack of socialness, my blunt way of communicating, and how distracting my repetitive behaviours were.

I still haven’t been able to understand either of these encounters fully, though I have to admit they play a part in why I have been avoiding events with other autistic people. I don’t want to struggle through similar encounters.

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Adaptation and Injury

When I was younger, I was injured multiple times. Some of these like broken fingers, broken nose, broken rib I recovered from reasonably well and have had no issues with since.

I have just had to start facing up to the more significant longer term impact of one injury though.

In school, aged 13, I tore my Anterior Cruciate Ligament (ACL). Then an administrative error meant I was never put in for the surgery recommended for the tear and by the time they caught their mistake, they decided it was too late and I had intermittent physiotherapy that was often cancelled. I’ve walked with a slight limp in cold Winters ever since.

This year I turned 30 and I recently started suffering with a lot more pain, my knee giving out beneath me and swelling, redness and a burning sensation on the knee that wasn’t happening before. Those who are up to date on ACL injury research would have already guessed what the doctors confirmed, that these were symptoms of arthritis, which occurs in around 75% of ACL tears within 10 years of the injury.

I didn’t know this until I started reading up on my old injury. My parents had no idea either, they certainly weren’t told about the possibility 17 years ago. I don’t know if doctors really knew back then.

So I am having to adjust to the realisation that I have early onset arthritis in my knee. This could mean a knee replacement before I’m 45. It probably will mean mobility aids before I’m 35 if the current progression is anything to go by. I work in a physical job where I am on the move almost constantly. I’m having to potentially rethink what this means for my career just after getting it on track.

I know that it doesn’t mean everything comes crashing down and falling apart but when you combine all of the above with my enormous difficulty with change as part of my autism, it’s a big adjustment that is sending my world and my routine into chaos.

Reading, Reviewing, Enjoying Media, Controversy and Biases (1)

I don’t regularly research the history behind the authors or the books that I read, it is difficult enough to maintain the routine of reading and reviewing without adding more steps to the process. However, because I follow a variety of people from the autistic and autism community on Twitter and keep semi-informed about goings-on elsewhere, I do sometimes come across information about the authors or the book that I wasn’t previously aware of.

Continue reading Reading, Reviewing, Enjoying Media, Controversy and Biases (1)

Google Images – Search Term “autistic person”

Quite a while ago now, I looked at the first 100 image search results returned by Google for the phrase “disabled person”.  It had some interesting results and I fully intended to do a similar thing for “Autistic Person” and then life got in the way and both my blogs went dormant for a while. Now that I’m back, I thought this was as good a place to pick up as any. Continue reading Google Images – Search Term “autistic person”

The ‘magical’ world of autism and the hypocrisy of referring to ‘god-like’ powers

Another study came out referencing the ‘magical world theory’ of autism and some members of the autistic community expressed their frustration at the othering connotations of using terms like ‘magical world’. I find these kinds of things equally annoying – by positioning reactions or responses of autistic people as part of some ‘magical world’, it’s essentially suggesting that autistic people cannot be understood as they are so mysterious and other-worldly. It’s another means of separating autistic people and non-autistic people, which does no-one any good. Continue reading The ‘magical’ world of autism and the hypocrisy of referring to ‘god-like’ powers

When cost makes a recommendation inaccessible.

It is fairly well known that a lot of resources for autism or disability in general are incredibly expensive. There is a tip that has been circulating for a number of years which suggests that sometimes people have better luck searching for items “for the lazy” than “for disabled people”. Which is a pretty sorry statement in and of itself.

Items which have value for a wide population of people just needs to have the word “autism” slapped in the sales title somewhere and the price seems to shoot up. Software which has become synonymous with autism or disability often has costs far out of reach of families or disabled people. Things are beginning to get worse in some ways as so many products move across to subscription based services – at least in the past once you bought the product you owned it. Now you have to keep paying for it monthly or yearly to retain it.

The reason this particular topic is figuratively rolling around in my head is because I attended a talk recently about autism and successful employment. During this talk, the main recommendation and accommodation discussed – at some length – was the use of the service ‘Brain in Hand’.

I first heard of Brain in Hand at The Autism Show a few years back and it sounded very promising. The handouts for it suggested that this might be a really useful tool for the massive executive dysfunction difficulties I often experienced.

Then I learnt about the price.

Now, there is of course an expectation that a service such as this would be more expensive than average apps or services – you essentially gain access to a mentor-via-text/phone/e-mail service. Those people have to be paid. Fair enough. I just don’t know exactly who can even afford this app – I can only assume a select few people get funded via their local authority, through Access to Work or Disabled Students Allowance, or a generous charity? I don’t know. Let’s break down the costs:

Brain in Hand1

So – £49 a month. Quite pricey yes but when you think about the work involved in managing and maintaining the app and everything perhaps it’s not so bad. Except…

Brain in Hand 2

Okay – so many people who would benefit from Brain in Hand might not necessarily know how to set it up to the best of their ability. If we divide that number over twelve months and add it to the original cost of £49 per month we are now at just over £72 per month. Already this is starting to look inaccessible. That estimate is for four sessions of one hour a piece – some people might need less, others might need more. So for paying monthly we’re looking at £868 for the year, for the yearly discount it sits at £820. Definitely edging into expensive, still feasible that people could afford it each year or that DSA might foot the bill (although only for the time spent as a student).

Brain in Hand 3

Except, that cost doesn’t include access to mentors. So that seems to be the cost if you have family members, friends, support staff etc. who will be acting as your mentors. If you want access to professional mentors who monitor your responses to Brain in Hand and intervene to support you via e-mail/text/phone call then that’s an additional charge. So that’s £90 a month, now sitting at just over £162 a month when the costs are balanced out.  Which brings our total when paid monthly up to £1948 a year and with the yearly discount it is £1815.

Except – that’s not necessarily the final cost. It seems to depend on where you are getting your mentors from. If you want to access Brain in Hand with support through the National Autistic Society then it seems as though you also require a workplace assessment so that brings the grand total to…

Brain in Hand NAS

The point of this post isn’t to suggest that Brain in Hand isn’t worth the cost. I don’t know if it is because I cannot afford it. I will probably never be able to afford it. It’s not just a one-off payment either, you’re paying out each year (although the NAS one may not be £2790 a year if the workplace assessment isn’t repeated). I can logically understand the need for the cost – it’s a niche tool, staff wages need to paid, maintenance needs to be performed. That doesn’t make it anymore accessible.

It’s easy to point to things like Access to Work, Disabled Students Allowance, Local Authorities and Schools and argue that they could foot the bill so the individual wouldn’t need to but when we think of how difficult it is for people to get access to far less complicated supports or services through these systems, exactly how likely is it that people are going to be able to get Brain in Hand funded (indefinitely) through any of them?

So when I sat through a presentation discussion the advantages of Brain in Hand for autistic people in employment, I just couldn’t help switching off because there’s absolutely no way I will ever be able to use it. Which I imagine is the case for a great many people

Death by Indifference

Over on my main site – I recently reviewed Justice for LB by Sara Ryan. It is one of those books that makes the reader angry at the state of the world.

Death by indifference has long been chronicled by organisations such as Mencap; there is not doubt that throughout history many people with disabilities – particularly learning disabilities – have died because the services tasked with caring for them did not.

Parents have written on blogs and social media frequently of the intense difficulty of knowing what their child is thinking or feeling, of how their child cannot tell them when they’re in pain or when something just doesn’t feel right. So imagine just what happens when those parents aren’t there anymore – separated by distance, circumstance or mortality – what happens to their sons and daughters then? The reality is far too many succumb to medical conditions which could have been prevented or are killed indirectly or directly by the very institutes and services which claimed to be there to help them.

Connor Sparrowhawk’s story is sadly not a new one and – for all the optimism that his family’s strength and group support will make a difference – it likely also won’t be the last of it’s kind. Far too often, people let the devastation and heartbreak from cases like this slip away from public consciousness. This cannot just be blamed on the non-autistic community either – whilst Connor’s family and the group of people who have banded around them have taken Twitter by storm, forcing people to acknowledge one of the most important events in the last four years in the autistic community… It’s merely a drop.

Looking at other autism communities that exist such as Wrong Planet or on other social media such as Reddit or Tumblr – JusticeforLB and Connor Sparrowhawk are rarely (if ever) mentioned. Neither terms show up in searches throughout the website or the direct tweets of two of the biggest Autistic Self Advocacy groups – Autistic Self Advocacy Network and Autism Women’s Network.

Why is this?

Why has Connor’s story been lost to the autistic community? Why aren’t they angrier about it, demanding justice alongside his family and the people supporting them? These are communities that exploded during the controversy around fidget spinners for god’s sake, yet on one of the most important events to unfold within the autism community in years – they are silent.

And to answer my own question, I really don’t know why.