Restricted Diet…plus autism

I have briefly mentioned having some restrictive/repetitive behaviour around food and drink consumption in another post but I’ve recently had something make that restrictiveness ten times more difficult.

I am unwell. I don’t know what with and neither do any of the doctors or consultants who have examined me and performed tests and scans on me so far. They’re taking me seriously (if you’ve looked at the comments under #PatientsAreNotFaking on Twitter, you’ll know this is a big deal) and they believe I am in considerable pain. However, one of the things I have been asked to do as part of ongoing investigations is to cut a lot of things out of my diet as they could be irritating potential problems.

The enormous cull of foods and drinks from my diet probably won’t be forever. There’s a good chance that doctors will eventually get to the root of the problem and from there I’ll be able to re-add some of the food to my diet. For now? It’s low fat (saturated/unsaturated/doesn’t matter), very low salt, low sugar, low acidity (preferably remaining close to neutral), with some specific items that I have to avoid that don’t fall into any of those categories.

All combined, plus being Autistic and having issues with texture, that cuts out huge amounts of potential foods and drinks. The next few weeks are going to be…challenging to say the least.

Burn-out: What do you do when special interests aren’t fun anymore?

Autistic Burnout is a well-covered topic in blogs and on social media and many autistic adults will experience it at least once but usually multiple times during their life.

One thing I find particularly difficult about the way autistic burnout impacts me is the devastating impact it has on my executive dysfunction and (perhaps even more importantly) on my special interests.

Flattening executive dysfunction means I struggle to manage even the simplest of tasks I used to. I find it impossible to plan out how my day goes or how I will complete work or how I will carry out necessary household chores. Eventually I have to work out which things absolutely need to be done or they will have serious ramifications and outright force myself to get them done. It takes enormous mental energy.

Usually I would then recoup mental energy by spending time in my special interests.

Except burn-out wipes out all desire to engage with them and all enjoyment I get from them. I suppose it is similar to depression in that way and while I can and have experienced burnout without depression, the two often end up overlapping at some point.

I have other, rotating, special interests that come and go but there are two persistent special interests that my mother informs me have been present since I was barely a toddler. Video Games and Books.

Losing both of these in one go with the chaos caused by burn-out has been difficult. My partner would tell me to play a game to help me relax and I would turn on the computer or the XBox and just have no interest in any game. Even ones I usually love and can play for hours and hours.

Books have always run side-by-side with my rotating interests – whatever my other special interests at the time were were supplemented by reading intensely about the topic. But they have been a special interest all of their own too. My parents had to remind me to eat as a child because otherwise I would read and forget about basic sustenance.

The first time I burnt out, I was terrified my special interests would never come back. This is the third burn out in ten years and so I knew this time that I could do things while I waited out the return of my special interests and thankfully, slowly they are returning. My XBox rejoices at having company again and my books are being read – slower than before – but read.

Obviously, a lack of reading impacted massively on my reviewing. Books on Autism has lain dormant for a number of months while I struggle to recover my enthusiasm and love for reading. Hopefully, it may too start to wake up again but given recent life circumstances (which I may address in another post) who knows?

“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.

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