Self-Diagnosis

Self-Diagnosis

The subject of self-diagnosis comes up quite regularly on my twitter timeline. I tend to stay out of the discussions when it does. They are often heated with strong feelings on both sides of the argument as to whether it is “valid”. I am autistic so tend to follow autistic people. The discussions I see will tend to be focussed on whether it is okay to self-diagnose with autism. Sometimes they touch on the broader subject. In not engaging in these discussions, it does not mean I do not have an opinion, nor have my views not been shaped by what I have read. I do now feel more comfortable putting my thoughts out into the world. This blog is mostly about autism self-diagnosis, but my views are influenced by the wider subject.

Before I talk about what I think, I will give a brief overview of the two sides of the discussion. I am not going into too much depth, I am just focussing on the points that I view as most comments. I am certainly going to avoid some of the more disagreeable points that people make on both sides…

Against Self-Diagnosis

The arguments against self-diagnosis all centre on one thing. Autism is a medical diagnosis. It is also a complex thing to diagnose. Autism is not something you go to a GP for 10minutes and they say “yep you are autistic”. Formal diagnosis requires trained professionals. There are lots of different tests out there floating about the internet and in books that a person can take. One of the more widely known is the Autism-Spectrum Quotient (AQ). The “science” behind this is that 80% of diagnosed autistics score over 32, 80% of non-autistics score below that threshold. It is a tool, nothing more it leaves a huge margin of error. For the record I scored 43. Additionally to this, autism has a lot of differential diagnoses. That means that symptoms/signs of autism are similar to other conditions, like personality disorders (more on that one later). This further reinforces the need for a professional diagnosis.

Pro Self-Diagnosis

Proponents of self-diagnosis focus on a couple of things. One of the big problems with autism diagnosis is that it is hard to access. Even if you get on a waiting list, it can take years. Here in the UK it is “free at the point of need” via the NHS. However, that presumes that local services are willing to pay. In other countries where you might have to pay, this could be very much out of a person’s price range. I know it can cost the NHS thousands of pounds in the UK. This leads to the second and necessary point to validate that one. People “know” themselves. There are a list of symptoms that are associated with autism. On social media, autistics are very open about describing what it is like to be autistic. I have done so myself. Therefore combined with the tools I previously mentioned, one can get a fairly clear idea that one might be autistic. One of the arguments I have seen tends to focus on a particular view that diagnosis only confirms a condition you already have. One does not need a doctor to diagnose a cold. One has a cold because of the symptoms experienced, such as runny nose, cough, fever etc.

So what do I think?

Although I view the merits of both sides of the debate, I do not see the individual argument points as cancelling  each other out.

My views are influenced heavily by me working in healthcare most of my adult life. If you ask a professional in healthcare (I did discuss with colleagues) I think the odds are high they would advise against it. Self-diagnosis, through the recognition of symptoms is only a first step. An individual notices something is not right. At that point you seek help. When it comes to autism, as with other complex conditions, this is vital, particularly if they symptoms are having an adverse effect on the person and their life. However, going back to differential diagnoses, there lies the pitfall of self-diagnosis. There are lots of treatments, alternative therapies and even quack treatments for many conditions. It is a unfortunate situation that it in various ways it is possible to get prescription medications without a prescription (usually illegal, not advised by me). If you are doing this off a self-diagnosis this could be very bad for you. That is why healthcare professionals would not advise it.

Moving on to self-diagnosis in a more personal capacity. I did it. I do not regret it, because I ended up being diagnosed with autism by professionals. Autism is not what I self-diagnosed with. I diagnosed myself with avoidant personality disorder. Then when I identified flaws in that, I added schizoid personality disorder. Then that did not work, I added schizotypal personality. Then a new flaw and dependent personality disorder, and obsessive compulsive personality disorder. Plus tinnitus and some other things. If you have kept track, I had self-diagnosed with 5 personality disorders. I wrote tens of thousands of words arguing the case. I was adamant to colleagues at work that I had one. They were not convinced, but they supported me to access mental health services (emphasis here on the dependent PD I thought I had). Maybe I got lucky in that I was able to access appropriate healthcare. I still see myself as walking, (sometimes) talking anecdotal evidence against self-diagnosis. Particularly when it comes to a complex condition.

So no, I do not think that self-diagnosis is a good thing. However in empathy, sympathy to others in a similar position, this does not mean I reject those individuals. Self-acknowledgement of  symptoms is the beginning of a journey of discovery about yourself. It sucks for autism how difficult it is to access diagnosis sometimes. I relate and would support as much as I am able. However, I do not think it is appropriate to say you have medical diagnosis (at least one more complex and debilitating than a cold) that is not given by a healthcare professional. Within a community, it is not hard to qualify the statement “I have autism” with “might” or “I think” when you are waiting for or hoping for diagnosis. Again this is not a rejection of individuals. I have encountered some really great people who express symptoms of autism, but have yet to be diagnosed. I wish them well, I hope they get an answer either way. They might be autistic, they might not be. Until diagnosis, it is just a maybe. For some maybe is enough, but not for me.In closing, I will only add a disclaimer that I would never, do not and will never (I hope) engage in doubting formal diagnosis. This is for the same reasons I advise against self-diagnosis. I am not a professional to pass such judgement. I am a “face value” believing person, I am told that is an autistic trait. If you say something I believe it. Only a couple of times have I seen people share evidence of their diagnosis. I would have to seriously redact to share mine!

#PuppetGate

A brief blog post in response to some of the more extreme views and behaviours by some aspects of the twitter autistic community towards #puppetgate.

I originally wrote a much longer blog, but I have decided to keep this short. I think Puppetgate has gotten out of hand and that the original strong message that some wanted to portray has been lost amidst some unnecessary negative behaviour from some people on Twitter. The #ActuallyAutistic cause of autism acceptance and understanding is undermined not supported by attacks on non-autistics however strong the feelings are. It is unfortunate because I believe that whatever individual or collective feelings over All in a Row are, there was an opportunity to further understanding of autism. I think that opportunity was missed.

If we want others to be better then we need to make sure we are ourselves behaving at our best.

All in a row: How I out stimmed a puppet

My first ever review of a theatre play. Tells a story of how I went to view a controversial play that is autism related and left some strong feelings for everyone.

Foreword

It is funny thing, for a person who does a lot of writing for work, it is rare that I have the opportunity to write my own perspective. I get to write in my own words, but they are telling someone else’s story, and I am always told what message I should be putting to the audience of the reports I write. It has been over 10 years since I have had the opportunity to really write my perspective with the possibility of sharing it. I am finding it quite hard.

I will not pretend to have the ability to be a critic, whether for film, TV or the theatre. For the latter, until this year I had not seen a play since I was in high school in the mid 90s. Macbeth. I am not superstitious. Touch wood. Writing a review or a commentary is new to me. Given my particular autistic profile, I don’t think I ever would be able to be one. More on that later.

In preparing to write, I read through a number of reviews and commentaries by others such as Shaun May (@shaunmay1987), Helen Ellis (@HJ_Ellis) playing prominently. It is  an understatement to say that I now feel suitably inadequate to the task. This is all so new to me. The detail and depth to their perspective is so unlike my own. I decided not to even try. This is my perspective, my thoughts, my feelings and my experience of this play and the events surrounding it.

So please sit back and prepare for a probably long winded tale of outrage, ableism, amusement, empathy,  adventure and betrayal. There might also be a bit about a play.

PS I am make no apologies for injecting my form of humour into my writing, my default state of being is quietly amused.

PPS Warning, I am told I over share…

Introduction

On Saturdays at 12.30pm I make a drink in a bottle (two actually), check my shoes are tied, double check I have my keys, wallet etc in my coat pocket, put the drinks in my bag and put on my coat. It is amazing when you think about it how complicated getting ready actually is. Then I go out for a walk. The walk follows the same route I take to get to my parents’ house. Just before their road, I turn around and head back the way I came to return home. I prefer familiar routes. I get home about 2pm. I do that every Saturday. Every Saturday I will have done that at 7am and 10am too. I am autistic and that is my Saturday routine.

On Saturday 16th February 2019 at 11.45am I broke routine. I did something different, that “thing” was to get ready and go to the theatre. The play was called “All in a Row”.

Me, you and how I see the world

Screeching halt sound inserted. I need to pause for a minute and try to explain somethings. Words are clumsy and in my view do not fully explain how I experience existence. They are either too much or too little. It doesn’t stop me trying sometimes. In writing, I get to think and delete. Oh how I wish I could delete when I speak (!). I am digressing. Back to the point. I need to share a few things.

Firstly, I don’t feel part of the world. I like a (mis) quote from the show Walking Dead (more on zombies later) “Its their world, we just live in it”.

Secondly, I have heard people have expressed liking to compartmentalise their life. I do that, but also more. To me there is not one world. Not even as when I sometimes mention the “abstract” vs “real” worlds. To me there are TV worlds, there are movie worlds, there is the Twitter world, there is the outside world (every place I go to is like a different world), the train world, the “work” world, there are book worlds, video game worlds etc. How I interact with them that varies. To me they are all real otherwise they would not exist at all. But for ease I will try to focus on referencing “abstract” which relates to things I think or are in writing and the real/applied world, the physical interactive world that we all really live in. Even though to me that is just one of them.

Thirdly, my favourite thing about the autistic community is that when I or another autistic says something is or will be hard, everyone just accepts it, because one way or another that’s our experience. There is no need to explain why, it just is. For me, going on the train is hard, walking down a different street is hard. Even walking on the other side of a familiar street is hard. Going to see this play was hard. Trains (the Bakerloo line sucks even for abled people), unfamiliar stations. unfamiliar streets. A theatre I have never been to. New people. Lots of people. Lots and lots of people. Did I mention the people? Yes, good, okay. When I say this was hard, we are talking about this being the hardest thing I have done in, well since the last time I said so, only in this case it was actually harder. I did not get to let it fade into the distant memory of yesterday. I need you to understand that this is one of the biggest most challenging things that I have ever attempted. This despite the fact that I have a degree and all sorts of other things. I would try to explain, but you’re probably already bored.

Outrage

In early February 2019, it came to my attention that my Twitter friends were very upset about a new play that was soon to come out. I followed the conversation back to the source. It was a promotional video for a play called All in a Row. I watched the video and it triggered a number of “red flags”. There is always a worry that a portrayal of autism will be stereotyped, that it will be marginalise and dehumanise the autistic individual. Despite what the actors, director etc said, there was a nagging feeling that this play was really going to represent a particular narrative of “doesn’t it suck to be an autism parent”. There is a genuine concern in the online autistic community that often the narrative switches quickly to the negative experiences of the “abled” person looking after the “broken” child. I will say, from what I have seen as a child to a parent, parenting does seem hard work with or without disability included. My parents have lots of kids.

However, the real concern, the cause of most of the outrage in my peers was over the puppet. It bothered me too. For most people upset by it, the concern was about the dehumanisation of the individual. Many people have written about this and why it is and does. I do not see the need to add to it here. I will only be repeating their words. Abstractly I acknowledge this perspective. Mostly, I was just freaked the hell out because Laurence looked like a fricking zombie and zombies are one of my irrational fears.

Calls were made for individuals within the community to try to represent. I considered the possibility of going. I live at the opposite end of the tube line (as do hundreds of thousands of others, so not worrying about disclosing where I live). I rejected it at the time. Breaking routine is not easy for me so I have to have a good reason. For many autistics, me included, the mental logistics of getting on a train and walking into a theatre are not simplistic. I did however make a genuine if flippant offer to pay for someone else to go. I saw at least one other person make this offer too.

Alongside this, little snippets of the script got identified, and in the context viewed seemed to add to the furore and the view that Laurence was being dehumanised and therefore all of autismdom was being dehumanised by this play.

The play’s synopsis didn’t help. Some of Laurence’s presentation as stated did seem a little bad. When you get only a few words to describe a person, a character, saying they pee on their mum’s pillow does not look great. I am autistic, I never peed on my mum’s pillow (I don’t think). She didn’t say I did when I talked about this play with her on the 7th February. This certainly added to the concerns about the marginalisation and dehumanisation of the autistic in the proverbial room.

Adding to the furore was Alex Oates the writer and others involved saying “come and see the play, then you’ll understand the full context” or words to that effect. That always comes across as mercenary, even if you mean it not that way. “Spend your money to get upset”. Ah ha…

Ableism

As I followed the Twitter war over the play, it became apparent, that for some it was an opportunity to dismiss the perspective of autistics. To focus on the art. Trying to keep track of who wrote what in a timeline of so many people became impossible for me. However, inside of all of this it was clear that the voices of disabled people were being shouted down by abled people. That was not good, but you know what? Twitter is not the best place to have a constructive debate. Unfortunately for many autistics social media is the only place for us to connect. Hopefully some people will have learned some lessons in the future for how to engage effectively with the community. There is more that could be said, but they are not relevant to my narrative, better, more authoritative perspectives are available.

Amusement

Hey, I love abstract controversy as much as anyone. My friends – the people I respect and admire – were upset (many still are) but my unhappiness was more at their upset than any direct feelings I had about the play. I one of the type of autistics who readily believes what people tell them, I am really bad for that. For confidentiality reasons I will avoid details, but there have been situations where I have been caught in a weird game of ping pong where the last person who said something was the one I believed. I became amused, not angry over this. Everyone whose opinion mattered to me in the community said this was bad. that meant it was bad.

I find it hard to explain how I experience and perceive the world. Words are inadequate to portray the concepts. Having seen this play I would say that I am a lot more like Laurence than I seem from this verbose account. I do not classify as non-verbal as I can speak, but I don’t find it easy doing so. Projecting my thoughts into the real world is hard. Often I cannot. I find a huge disconnect between the abstract world and the real world. I became amused, I thought it was strange that so many were so upset (sorry autistic friends) because beyond my intellectual acknowledgement, I was not phased by it. They were really on the warpath. That was funny even whilst I was still on their side. Then of course, all the damage control was failing (sorry play people) and that nothing anybody on either side of this thing seemed to be able to do or say to achieve peaceful resolution. Actually it seemed that it was just getting worse. For me that was funny. Does that make be bad?

Empathy

I am bad with change. I really am, but only change that affects me. I say this because I am also adaptable in a way that I have observed others are not. On day one there was outrage over Laurence being a puppet. In my case a zombie puppet. Does that make it day Z? On day two (Z+1) I had adjusted to the idea. I was freed from my discomfort and sought to try to understand the two sides.

I didn’t feel anything on the subject of dehumanisation. I understand the concept, but I have never really experienced it in the real world. I read about it in the abstract world, mostly in the news. A certain President who will remain nameless ad their cohorts get accused of doing it quite a bit. It is not in my direct experience, so I didn’t really see how the Puppet dehumanised me, so I didn’t feel angry. It was abstract. Puppet = dehumanisation. These guys were bad for doing it. That’s what I was told. That’s what I repeated. I was not angry. It just is. However, I did not think that I was dehumanised by this portrayal, although I was still busy freaking out at the whole zombie thing.

On the other hand. I do know what it is like to have my work being criticised by other people. In my case I usually feel it is not always justified. I have bitten my tongue to avoid retorting when someone asks me to re-write the truth to avoid hurting someone’s feelings. They didn’t seem to mind hurting my feelings and force me to lie. Then there is the shame of failure, of not getting it write the first time. That urge to defend your work because of all the effort you put into it too, even if people haven’t seemed to understand it. For Alex the writer, there was the added issue of all this anger over his work, that nobody had seen, all based on brief video and some out of context snippets of the play. I empathised with Alex. Traitor that I am.

So I was torn between my “people” who were so upset and the other side. I saw only one resolution. I had to go and see this play. I had to experience it in the real world. Shit. I believe that is possibly the first time I have ever used that word appropriately (!). I needed to understand and the only way to do it was to go. I had many questions, I wanted answers. I still do.

Adventure

So here we go, off on an adventure. I’m like a hobbit, not so keen on them, especially if it feels like an obligation. It’s a bit easier when there is someone with you. Bilbo got a bunch of dwarves and a wizard, I have my IPhone and IPad. Booking the tickets was the easy part. I actually panicked afterwards because I forgot the tube lines are sometimes closed for engineering works at weekends. Fortunately not when I was going.

The location is not ideal for an autistic person. There is no quiet waiting area, just a bar and outside. I wanted to try to explain how I am when in this kind of situation. My best analogy is not much more “functional” than Laurence and I didn’t speak the whole time. I have AAC software on my IPad, but I am not proficient in its use, and usually end up writing notes. When I am with other people I know I defer to them to keep me organised, but when you struggle to communicate, trying to figure out what you are supposed to do is awkward. Thankfully, the staff at the Southwark Playhouse were helpful and understanding despite the communication barrier. Sometimes I feel talked down to by people when I cannot talk. That’s actually kind of funny as I usually tower over them (I am tall). They did not do this, talk down on me. literally (since they couldn’t) or figuratively.

Phew, so nearly 2.5k words in and I am finally writing about the play. I keep thinking of things I have forgotten to mention, but I am getting tired, and digital cities don’t build themselves. I don’t know what perspective you as the reader have gained of my objective in going, but I was still determined that despite any sympathy I have expressed towards the writer and to the cast I was firmly determined to find out if this thing was ableist against autistics. I’d recalled it was labelled as a comedy and I had brought a note pad to write down all the things people laughed at. Were we the autistics the source of some jokes? Autism is no laughing matter, unless we are the ones making the jokes. FYI.

Unfortunately my fatal flaw kicked in. Generally I wouldn’t say I have an autistic superpower, but I do have a superpower. I experience absolute immersion when passively observing a world. My suspension of disbelief is absolute. There is no such thing as bad acting around me. For the duration of the play, it was real. Laurence is real to me, not like other people are, but you want to try telling me Kermit isn’t real? Just don’t.

I have decided to avoid spoilers, so I will try to outline my experience of the play. My perspective of what happened without too many.

Whilst everyone is taking their seats, Laurence (puppeted by Hugh Purves) and Gary (Michael Fox) came in and were doing some stuff. Gary in the play is the paid care worker for Laurence. Laurence was stimming and I was so stressed out I was too. We had a stimming contest, I won. But then, Laurence had to work.

 I do have some critique, once the play started properly, the music was too loud, the lighting effects were a bit disturbing. It started weird and I struggled to follow what people were saying I guess retrospectively they were monologues or were they soliloquies? I hated literature at school, I read to visit worlds and to explore stories, not for the love of words. It alternated between Tamora the mum (Charlie Brookes) and Martin the dad (Simon Lipkin). It would have been great to have a copy of the script to use in lieu of subtitles.

It got easier to understand as the play started being more a narrative. It was pretty tough going all the same. I found myself disliking Martin (Simon Lipkin) almost immediately, my parents made a rule of never swearing in front of their children (I was like 30 when my Mum finally swore in front of me) so I was not impressed at how much he was swearing, even in front of Laurence. As I calmed down a bit, some thoughts brought me back to reality and I kind of began to think that this play was supposed to be from Gary the carer’s perspective. Alex Oates the writer had experience as a carer and I think that shows. There was a sense for me that Gary sometimes wanted to tell the parents off, but couldn’t because he worked for them.

The play is about 90minutes so that would come out to many pages here. It was tough and it was difficult and I have not met anybody with Laurence’s specific profile (but I have read about similar through work). Sometime I worry that when we as autistics are busy fighting for ourselves and shouting to the world that we are people, we forget that so is everyone else. It seems to me that happens. I thought that it was good that this play tried to address this issue, parents are more than just parents. Autistics are more than just autism. Carers are more than just carers. Even if we don’t need to know about their love lives or their cats? What was the deal there?

It is also important to note that they showed a fractured relationship between Tammy and Martin. They rowed often. Personally I didn’t think that Laurence took the blame for this. That was really difficult for me. The arguing. Laurence whimpered, I wanted to scream and run out of the theatre. I just about managed not to.

I did take down notes about the jokes, mainly what made people laugh. Only a couple were  specifically linked to Laurence’s autism profile. The one that was prominent to me was a reference to him being messy, but also like of things being in straight lines. I am messy and like straight lines too, I was not offended.

When I started to write this, it had been to portray a message, that ultimately everything is down to perspective and individual experience. I am not sure I have achieved that. Now I am trying to salvage that argument. If you think that the portrayal of an autistic as a puppet is wrong and dehumanising then I am sure that this autistic will not be able to dissuade you. I think maybe I love puppets (or at least the muppets) too much to take offence. Even when they are freaky and zombie like.

I noted that other reviewers commented on the audience reaction. All I saw was that about 75% of everyone gave a standing ovation. Everyone clapped. I tapped my arm.  I hope the cast were not offended, I am touch sensitive and clapping hurts.

Simon Lipkin had offered on Friday to answer any questions that attendees might have after a performance. I said I would like to take him up. He said he looked forward to it. Unfortunately, I was not sure how to make that a happen after the performance finished. Once reality rushed back, I was back to being a bewildered autistic in a strange place. It is probably for the best, I was not ready or able to detach Simon from Martin. I am afraid of Martin. I went home. I needed to, I needed to be somewhere familiar.

Betrayal

So here we come to my confession. I enjoyed the play. I think I wasn’t supposed to. Many of the people I like and respect are upset by it. They see ableism and dehumanisation. I want to see those things, but I don’t. I saw other things, scary things, I heard too much noise and I related to Laurence in a way I rarely am I able to do with others. I personally thought that Tammy and Martin were bad parents. I didn’t feel that Laurence was dehumanised. I listened to the arguments for and against using a real person. I am unfamiliar with the reality of this, the rules and challenges that this might present procedurally. I do know I am grateful that they didn’t. Late last year, there was a video I watched of an autistic child being restrained by a quack so he could perform a head massage that was being touted as a cure. This was traumatising for me. I did not wish to see it’s like again. It made it easier for me watching the play to have the issue of restraint presented to a puppet. With all the other challenges that I had gone through to get to that point. I could not have survived it.

So there we are. My betrayal of my community. I liked this play, I didn’t see it as dehumanising and I was ultimately glad they used a zombie like puppet. That is my perspective. I respect the perspectives of my peers, but they were not mine.

Conclusion

Most of what needs to be said has been said. My experience will not be your experience. My autistic presentation is not the same as any other autistics. The reality is we all make up our own minds. I acknowledge respect and admire the views of my peers in the autistic community. We will not always agree, but I will always be there for them when they need me, if and when I can be. There is a saying I was taught at work. “Pick your battles”, I don’t think this one was necessary, others do.

As to Alex Oates, Simon Lipkin, Charlie Brookes, Michael Fox, Hugh Purves and all the other people involved in this stage production. I want to thank you for putting on what I am sure must have been a challenging performance. Its been a “roller coaster” ten days for me, but I learned quite a bit and got to experience a whole load of stuff that I wouldn’t have done otherwise. Despite the personal difficulties, I am glad that I did it.

I would like to see the play again, I am still very eager to have the opportunity to talk to the cast and even maybe Alex Oates to help me understand some bits and pieces. If there was some prospect of arranging this, that would be amazing.

But, as I finally end all this, I am left with one burning question. Why the hell was Laurence that zombie fricking GREY!