Amazon banning books…

At this time of writing (Friday 15th March 2019), there is a controversial move by Amazon to stop selling books on autism cures and also promoting ‘antivax’ theories as the cause of autism. People, including other bloggers on the subject of autism are up in arms about this.

I’m sorry, but as a reasonably smart, educated person with autism, I simply don’t understand the cause of all of the excitement.

I’m not American, nor do I live in America, but Andrew Wakefield, who first performed the now discrecredited ‘research’ into the MMR vaccine and autism. The Lancet, the British medical journal, retracted the study and Wakefield was subsequently struck off the Medical Register, for dishonesty. Being ‘struck off’ by the General Medical Council is rare and only under grave circumstances.

For further reference, Wakefield was a gastro-intestinal doctor, he did not have any clinical interest in autism, or vaccinations.  

A cure for autism?

There isn’t one. If there was, why would anyone who is on the spectrum still be on the spectrum? The condition makes human interaction incredibly difficult, reduces employment prospects, makes sexual and physical relationships far more difficult and many other things. If there was a cure, people would not be on the spectrum.

I also object to the theory or a cure, because that, by it’s nature states that I am, in some way *sick*. I’m not unwell. I’m just different to a neurotypical person and I’m certainly not going to seek a ‘quack doctor’s *cure* for that; especially, as many of these seem to involve fairly drastic methods involving electric shock therapy!

My thoughts on Amazon as a business. I despise the fact that in the UK they seem to be very adept at tax avoidance. Online businesses are rendering the high streets desolate. Both of which annoy me. However, in their removing misinformation publications? Brilliant! Bravo!

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Moderation and obsessive behaviour

Firstly, I would like to apologise for not posting last week. In my defence, it was my birthday and I had my girlfriend here, so I was otherwise busy (I am loathed to use an expression like “tied up”, because of the obvious sniggering which will ensue!)

I was considering this topic specifically as the cross country mountain bike racing season is starting very shortly and I’ve been occupied with training, as well as tutoring and interview stuff for my PGCE, all of which seems to dictate that my body needs, on average 9 – 10 hours sleep a day and still wake up feeling like I could do with another 6 hours.

Weather this last week has been thoroughly abysmal; the area has been hit by, snow, hale, sleet and rain which has now relented to 29mph winds and sporadic rain; do I feel inclined to go out riding in this? Not at all. Consequently, I’ve been sweating it out on an indoor turbo trainer. Software does make this rather more enjoyable than sitting on a spin bike, but it’s certainly hot and uncomfortable but the benefits are still there; certainly in building up power and interval training is easier indoors than on a mountain bike trail.

However, my own sense of moderation versus my obsessive traits means that the risk of overtraining is very high and this will either lead to stagnation, or worse, injury. It’s a fine line: at the moment, I have some spare time, this won’t always be the case and I know that I should be productive. I have studying to do, training to complete and a flat to keep organised and clean as well as part time work as well as having a personal and romantic life. None or which I am willing to compromise.

I suspect that I’m not the only person on the spectrum who needs to be strict with themselves, or else, nothing gets done. That is the crux, it’s finding the correct balance and I worry about this almost constantly. Am I overtraining? Is this niggle, just a niggle or symptomatic that I am training too hard? Why after vacuuming five minutes ago, does the carpet look like I haven’t cleaned in days?  Am I studying enough? Am I absorbing enough? Am I preparing enough, or not enough? Why aren’t I just a little more efficient and how do I become so?

In short, I have never been good with moderation, although I suspect that applies to anyone on the spectrum; I’m either full gas or nothing, I also can’t recall any point at which I wasn’t, which supports my contention that it’s one of my autistic traits. After all, we don’t grow into the condition, it’s inherent.

I guess that I will be sensible and force myself to not train today. My tutoring is now completed and I had housework to do and the cat will be grateful if I get cat food. I can then settle down and do a couple of hours studying and organising my study notes.

Stay well, stay safe and I’m always interested in the thoughts, comments and suggestions from anyone reading this blog.

#actuallyautistic #autism #aspergers #mountainbiking #xcmtb #mtb

Terminology

First of all, apologies to anyone who was waiting for my blog yesterday, I got bogged down in other things. Anyway, here’s this week’s ramblings.

The National Autistic Society states that there are 2.8 million people in the UK affected by autism on a daily basis. That’s the population of greater Manchester!

Am I autistic or a person with autism, or neurodiverse? 

On various forums and blogs this seems to be a big debate, so as I love linguistics I thought that I would throw my spanner into the mix.

Personally, I refer to myself as an autistic person. I use the term ‘people with autism and autistic people’, although in writing, I do use the terminology interchangeably. I do so, simply because I feel that it presents itself as less repetitive phraseology and as such, makes for better writing; I have never claimed to be a writer, nor an expert on the subject of autism. I have a Level 2 qualification in the subject of ‘Understanding Autism’ but that’s merely scratching the very tip of the surface of a very complex subject.

I do like the term neurodiverse because it simply acknowledges that a person on the autistic spectrum sees the world differently to those who are not on the spectrum. The simple fact is that, yes, we are different within a predominantly neurotypical environment. However, also our environments might be as unique as the person within in them. Within my own social circle, I suspect that an awful lot of my friends are on the autistic spectrum; I also know for a fact that a lot of my friends are on the spectrum or are around people who are autistic. It’s highly likely that most people have encountered autism at some stage or point in their lives.

Anyway, I tend to use the term ‘autistic person’ simply because I am autistic and a person. It’s as simple as that. Whilst I can appreciate that some people prefer to be referred to as a ‘person with autism’, I personally see that this infers a negative upon the person. I embrace the fact that my autism makes me different to others who are not autistic. We are taught to embrace diversity and for this reason, I am an autistic person and not a person with autism.

My autism makes me who I am, I don’t know where my being autistic stops and my personality starts or whether or not they are intrinsically linked together; I rather suspect that they are one and the same.

Whilst being autistic does not make my life and social interactions easy, quite the contrary, I love being different from the neurotypical herd. I am not sick, unwell or disabled. My genetic and neurological wiring is simply different.

In short, terminology is just a matter of phraseology. We are simply autistic. That in itself makes us wonderful, brilliant, introverted, extroverted, fabulous, gifted and a great many other adjectives. Embrace life and don’t let the semantics tread you down.

#actually autistic #autism #nas #autism

Sense of touch…

Some people have stated that I’m unusual as a person with autism, because I like physical touch. My response is a fairly stock answer that ‘It’s a spectral condition and that we’re all different’.

I like touch, I enjoy the intimacy of contact with people I know. But put me in a crowded place with people I don’t know and nothing to distract me from my lack of personal space and I’ll probably run for the nearest exit or otherwise meltdown. I am fine with concerts, in fact my favourite bands will have me at the front and centre of the stage and I’ll sacrifice my space for the experience. Yet, normally, I don’t want strangers to touch me.

I lived in the French speaking region of Switzerland, and love the Country and the culture, but the Swiss do believe in kissing each other on greeting and departing; not the French one kiss on each cheek, but three kisses, which always confuses the French and frankly seems to terrify the Germans. This is something which is not usually performed on the first introduction, but is considered the norm on saying goodbye on a first meeting. It took me a while to get my head around this concept and on occasions, just like in English protocol, I had to expressly ask what was accepted or expected of me. I still do this in the U.K. despite having lived here for most of my life. Some people would say that this is my trying to mask my autism or to fit in a predominantly neurotypical world; possibly, this is the case, more a case of me not wishing to be impolite or get convention wrong and look ignorant, after all, none of us wants to look the fool.

So, yes, in I’m friends with a person, I am perfectly happy with physical touch and contact. I’m happy kissing or hugging as a form of greeting or bidding someone goodbye. I’m also more than happy with physical intimacy on a more romantic level, but that’s something I really don’t discuss.

I’m fairly sure that the perception that people with autism don’t like touch is a purely personal thing, I know NT people who are incredibly anal about their personal space and  I’m also aware that some people on the spectrum are similar and completely opposite to me. We are after all, all wonderful and unique people and what pleases one soul, may not automatically please everyone.

Also situations differ, in the event that I’m having a meltdown, I need very firm pressure and I generally prefer firm pressure than a light touch. My own sense of touch is heightened during periods of stress and I can feel my environment and soft touch during stress feels a like static.

I would be interested in how others perceive this sense.

Touch

Obsessive behaviour, but ‘Yuck mud’

An unusual title, I suppose but my brain rain out of wit; possibly, it requires more coffee. Currently, the neighbour’s car alarm is going off and sending me to distraction and then the the car needs to cuddle me.

Anyway, digression aside and apologies for running a day late (I had college stuff getting in the way).

As I’ve mentioned before the triad of autistic traits includes obsessive behaviour. I’ve always been one of those people who is generally obsessively clean, however, I ride and race mountain bikes and run and in the past, I have engaged in several roles and hobbies which run completely counter to my desire to feel clean. I’ve spent weeks in a field on exercise with the military, I’ve played airsoft, I also run. The crux of the matter is that I seem to spend a lot of my self-soothing time in pursuits which involve getting dirty. The idea of being dirty is completely offensive to me and yet, when following my obsessions, I generally end up filthy. The exception to being dirty therefore,  seems to be that being dirty without purpose is abhorrent to my senses. But getting dirty in order to achieve something beneficial to me, that’s something that I’m perfectly happy to do. Except, I cannot stand my hands being dirty… never could. Whatever is being done, my obsessive behaviour means that I washing and drying my hands in-between doing tasks which involve getting my hands wet (like washing dishes FFS!)

Therefore, I have to wear gloves whilst riding, I wear latex gloves whilst washing my bike; which despite the fact that I have nowhere to wash a bike at home, it gets dismantled after every ride and cleaned: in the bath.  No, I am not Albert Steptoe, I don’t get in the bath at the same time!

I am aware that the desire for cleanliness is not uncommon amongst the neurodiverse and I’m also aware that at times,we all run out of the mental strength to satisfy our own requirements to be clean or to maintain a clean environment. This tends to lead to feeling worse and thus the circle becomes ever decreasing. Therefore, I feel that it’s vital to do as much as possible to avoid those lows; if you have to go and get dirty in order to smile and then get clean, do it. Our lives are precious, interesting and diverse, with different challenges than those of the PNT world. So we must do whatever we can to feel complete and well. In my case, I’ve got a few days with my girlfriend and then on Sunday, I shall be out getting muddy and then cleaning the bike again.

#actuallyautistic #austismspeaks #mountainbiking #autism

Coexisting mental health …

I was watching a film on Netflix recently, Neurotypical and the subject of coping with anxiety came up. I therefore thought that this subject would be relevant for discussion as a common co-existing condition for people with autism is a greater propensity towards suffering from anxiety and depression.

I’ve heard of autistic children being considered for antidepressants and whilst this is obviously something which should concern every parent and anyone working with children. However, considering the fact that some people suffer from anxiety and depression to such an extent that it become physically debilitating, as well as the mental aspect, is medicating a bad thing?

I was born in the early 1970s and as such, mental health awareness was largely much maligned and the general attitude towards mental health problems was ostracising the person and often just being told to “put yourself together”. Which obviously cured everyone and made us a more tolerant and sympathetic society; or not.

Even in the 1980s, this attitude was still pervasive: – In my own case, a lot of the things which should have been autism indicators weren’t noticed. People were trained in recognising the condition outside of the very severe cases or where the symptoms were obvious. I showed many of the typical signs, when I look back on it and I’ll discuss further in another article. I also suffered from severe long term mental health issues, some of which were recognised at first in my early teens, none of which were treated until decades later. So, I was first diagnosed with depression in my teens and I suspect that my anxiety had been ongoing as long as I can recall. I have had severe panic attacks, arguably have PTSD, anxiety and depression. I suspect that my anxiety is the major issue and one that has been confirmed by at least one medical professional.

Had I received treatment for this decades ago, maybe the problems would have had less impact upon my life and that of those around me; depression and anxiety, after all, are destructive illnesses. I realised that I needed to return to medication in the late stages of living in Switzerland, a Country that I truly love, but during a very dark period, my marriage had collapsed, I was unable to find work and I knew that I was going to have to return to the U.K., having nowhere to live and so on. I realised at this point that I needed to seek help; this was to prevent harm to either myself or others. Medication doesn’t cure the problem, but it does help me to deal with world on a daily basis and to have regained some focus.

However, attitudes have not always changed. I was told by one GP that I didn’t need antidepressants and that I should exercise. My response to such ignorance was to inform her that I spent around 20 hours a week training but that I still suffered from anxiety and depression; sadly, her ignorance was echoed throughout the practice. I shortly found an alternative medical practice and I can state that they are generally excellent. Yes, I agree that exercise can help with depression and anxiety, but it is not an absolute cure or physicians would be prescribing gym memberships and exercise routines rather than costly pharmaceuticals.

So, in short do I believe that children, or adults for that matter with co-morbid anxiety and depression should be considered for medication? It’s my personal opinion that if there is help, why not make everyone’s lives easier. Anxiety and depression are hell on earth to live with, childhood suicide is on the increase. Why should people be so stigmatised about making the lives of those suffering easier.

As I’ve tasted before, I’m not an expert on autism, nor a physician or clinician, but in recent poll I took, 78% of people were in favour or medication to help reduce the effects of depression and, or anxiety.

Doing things I dislike…

NT and Neurodiverse alike, we all have to do things that we dislike. This is part of life and whilst we may procrastinate and try to find alternatives, we have to face these demons. Forms and general formal communication is my personal demon.

I’m currently embarking on this years round of PGCE applications, with the intention of qualifying as a primary school teacher. Various, financial and professional hurdles got in the way last year, hence, I’m having to go through the hoops once again.

Whilst, I’m very good at certain things, I’m not good with forms; in fact, forms, even simple ones, fill me with dread. I’ve got through a few pages and it has taken me most of the afternoon. I’m stimming and trying to self-soothe and these things are helping to keep my anxiety at a controllable level. However, this is slow progress, it just needs to be completed and I’m trying not too curse myself too much for hating doing it and finding something which shouldn’t be scary, so terrifying.

It’s not just academic forms, job application forms are the same as are most other forms. Even making choices of places I would like to complete the course has been stressful. Next stage is finding people willing to give me references…

‘Do I disclose myself as being on the spectrum or not?’

‘If I don’t I’m being less than honest and I may not get available help and support later if I need it. If I do, will it mitigate against me?’

‘How long is it going to take to include three decades of work history; yes, I don’t have anything else planned for this evening, but damn, I just hate forms’ 

All of this thoughts and a million others which are completely tangental serve to compound the job in my head and make it bigger and scarier than a simple online form should be.

In the meantime, here’s what my desk feels like this: –

paperwork