Social Robot

My name is Dave, and I am a social robot.

What I mean by that is, as much as I hate to admit it, I rely heavily on words and phrases that I've picked up from other people, TV, YouTube videos etc. My day job is to help customers via online webchat, and in the webchat world this kind of phrases are called canned answers or canned responses. I've always felt that I don't really have an opinion on most things, but I'm starting to realise that it's more that I do have opinions and feelings, but I don't always have the words to express them. Either that, or I don't care enough to have an opinion. Sometimes when I hear people talking about a certain topic I'll take a word or a phrase that I've heard them say that most closely matches what I feel and either repeat it back to them in the conversation to show that I agree with them, or I'll use it next time I'm talking to somebody about that topic. I think politics is probably the main topic that I've done this with because until a few years ago I really didn't have a clue about it. Not that I know what I'm talking about when it comes to politics these days, but I definitely understand more than I did.

This use and recycling of social canned responses is part of autistic masking, but it's also a way to learn about things for me. It gets me involved in the conversation (or what little conversation I generally take part in...) and helps me to pick things up and learn that way. And I guess the fact that most people don't share a lot of my interests probably helps with the masking side of things in that they don't know that it came from a game or a film or something like that.

Not all of my canned responses came from other places. I came up with some of them myself (although they were usually short) and I have been picked up on using the same words and phrases a lot in the past. One that I remember when I was a kid was that I used to "Yeah, fine" a lot and my dad joked that I should have a button to press so that it says it for me. Looking back it probably sounded a bit dismissive but it was the quickest and easiest way for me to express that whatever we were talking about was ok. I never was one for talking lots.

The term "social robot" itself came from a book I read probably around 10 or 15 years ago about how to meet women. The writer used it to compare the performance of meeting people and obeying social rules of "popularity" to how you would normally be in every day life. I feel that being a social robot is better suited to autistics in reference to masking for survival and to get through social encounters with neurotypicals. A lot of us have actively spent time studying social rules and observing neurotypical behaviour so that we can learn the behaviours and communication methods that we can then perform rigidly in our robot state to pass as neurotypical. I personally haven't done a lot of conscious studying of people, although I do definitely pick up bits and pieces as I go through life and they sometimes become so ingrained in me that I can't always remember where they came from, or that it even came from somewhere else in the first place. This is similar to (or maybe part of) how many autistics including myself have confessed that they don't know where the mask ends and where they begin. I would go into masking in more details but it's not something I've really got my head around yet in terms of how/when I do it, so I've asked somebody for a guest post about it from their point of view which should be coming up soon.

In the meantime, as always, please hit the Follow button in the side bar and follow me on social media. I'm on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: Black silhouette of a toy humanoid robot on a white background. Under the silhouette is the word "Autism" in rainbow colours, and under that is "Social Robot" in black.]

Autism As A Label

Autism is something that's often considered by neurotypicals as "just a label" and not something you should be putting on yourself. Despite this, the autistic community take a very different stance on it, and that includes those members of the community who are self-diagnosed. As someone with lived experience of being told "it's just a label" prior to diagnosis, and then seeing and fully appreciating the value that said diagnosis brought, I thought this would be an important topic for me to discuss here.

After my first autism assessment concluded that my only issue was a lack of confidence it left me unsupported and without the closure I was seeking as both me and my wife knew there was more to it than the assessors had decided. That's why when I moved back to York I decided to go for a second opinion. The first GP that I saw in York was of an older generation who clearly didn't believe in mental health issues, which was shown by how she dealt with other family members seeking help by pretty much rejecting them and telling them they were over reacting. Anyway, in my particular case she asked why I want to label myself with something like that, she told me I didn't need it and then gave me the details of another mental health service that wrongly sent me to a couple of months' worth of CBT sessions for social anxiety. I soon realised the CBT wasn't working and arranged an appointment with a different doctor who then set the ball rolling for me to get assessed in York (my previous assessment was in Leeds).

Fast forwarding to over 18 months later I finally got my autism diagnosis, but not before I had difficulty at work in requesting reasonable adjustments because my role had changed. I think I explained in a previous post about the issues I had at work so I won't go into it here, but the long and short of it is that I had to fight for months to get any adjustments put in place throwing all sorts of law and regulations at them before I finally got the adjustments I needed, but even then it was on a temporary basis until I got officially diagnosed. My diagnosis came just as the temporary period was about to end and it made sure that it was made permanent. So that's one way in which being "labeled" by a diagnosis would have helped me much sooner when it comes to the world of work.

On a personal level though, the uncertainty of "am I/aren't I?" was unbearable and the acknowledgment that my diagnosis brought gave me so much closure and relief. I felt like I could finally be open about being autistic and discuss it more publicly than just in the online autism community. A fellow autistic online (can't remember who it was, but if I remember I'll edit this to credit them) once said that labels in the sense of food packaging are helpful because they give so much information about the food, nutritional information, allergens and so on, and basically said that an autism diagnosis is the same in that yes it is a label, but it's one that helps others understand that you might not thrive in social situations, or that you might be sensitive to loud noises, or that you might really, really enjoy trains or wrestling or anime or psychology or literally anything else. It's a much quicker, easier and more painless way of communicating your needs and your reasoning. Imagine if someone questions what you're doing when you're flapping your hands. If you answer along the lines that you're self-stimulating to soothe yourself because you're feeling overloaded they're likely to think you're a bit of an oddball, whereas if you answer with "I'm autistic," their reaction will probably be closer to "Oh, I get it now." At least, I like to think so anyway.

Autism diagnosis or a self-diagnosis isn't JUST a label. To many of us it's validation, it's acceptance, it's acknowledgement, it's understanding, it's a weight off our shoulders, it's a word that we can give to society to explain who we are. This is why we should be congratulated when we receive a diagnosis in adulthood instead of commiserated. I like to think that the same congratulations should apply to a family whose child has been diagnosed because it means they've been given a greater understanding of what exactly they may have been struggling with (if struggling at all - each family will be different) and what they need to do to help both their autistic child and themselves as a family. But in reality a lot of parents let their lack of understanding manifest in grief, and/or taking the wrong route in an effort to support their child (such as ABA for example). I guess being late diagnosed may have saved me from something like that in my childhood, but on the other hand there are things that I really would have benefited from had I been diagnosed in childhood.

I was bullied at lot at school and I would hope that having a diagnosis would have helped with that. I think it would have been another target for the bullies to get at me for, but I really, really hope that if I had been diagnosed my school would have done a hell of a lot more about it than what they actually did, which theoretically would have counteracted the bullying.

I've never been good at making or keeping friends and I believe firmly that if I knew I was autistic I would have received much more understanding from my peers as well as possibly known my own limitations and set boundaries for social situations.

Tying into that is my eternal struggle (until I met my wife) with romantic relationships. Each of my 3 previous relationships was shorter than the last, and the first 2 ended primarily because I was a lot more interested in them than they were in me. It's only in the last couple of months that I've discovered this is a very common autistic trait and the person we're dating can become a sort of special interest. Again, I think knowing I'm autistic and being able to explain that to my partners at the time would have theoretically made them a bit more patient and understanding of how I am. Either that, or it could have put them off completely and made them not enter a relationship with me in the first place. If I'm honest I don't know which route would have been better.

And finally, I think it would have benefited me in a professional capacity as well to have known I'm autistic. I've had more jobs than I think most people have, and I left a lot of them on bad terms. I know I've said it a lot here but it all comes down to understanding as I could have explained my needs and my employers could potentially have been more accommodating of them if we knew I was autistic. Don't get me wrong, there were non-autism-related issues that came up with some jobs (like when I was 20 or 21 I would show up to work hung over more often than I should have), but overall it was mostly issues that could have been addressed and dealt with had I been diagnosed autistic earlier on in life.

So there you have it. That's my take on the "label" of autism, and how it can be an extremely helpful thing for an autistic person to have in life. This is just my personal experience though, and I'm sure that there are infinite other benefits that autistic people have/would have experienced from it depending on when they were diagnosed. Please hit the Follow button in the side bar and follow me on social media. I'm on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: A red and white name badge that says "Hi, I am" in a digital font, and then "Autistic" in a font that resembles handwriting. This is on a white background with "Autism" written at the bottom in rainbow colours, and under that is "As a Label" in black.]

Self-Diagnosis

Self-diagnosis is something that I struggled with a little bit before I was formally diagnosed. Well, maybe saying I struggled isn't quite right, but I didn't feel comfortable in disclosing my autism while self-diagnosed unless I had to. I knew I was autistic before diagnosis but it felt like it might just be in my head so I didn't dare tell anyone except members of the online autism community who I'd never met. Obviously it's most likely not the case that it's just in your head so I wanted to go over some reasons why self-diagnosis is perfectly valid.

1. Autism is often overlooked in women and in minorities because it used to be seen as something that only occurred in white males. We know nowadays that literally anybody can be autistic.

2. Getting a diagnosis can be expensive in certain countries. Here in the UK it's done under the NHS for free, although there is also the option to go private.

3. The diagnostic person/team that assesses you might not be as knowledgeable or up to date as they should be. This happened to me when I was 1st assessed. They decided I wasn't autistic, so when I moved to a different area I had to ask to be referred again for a 2nd opinion where I finally got my diagnosis.

4. Even if you can afford a diagnosis the wait time for it is often ridiculously long. I can't remember how long my 1st assessment took, but I know my 2nd one was 18 months from my GP referring me to me getting my diagnosis.

5. Diagnostic assessment may not be physically accessible. I would imagine there's probably an assessment centre in most (if not all) major cities, but more rural areas might not have one meaning that you'd have to travel.

6. Your GP might refuse to refer you. This happened to me and I know it's not an isolated case. The GP I saw refused to refer me because she decided I didn't need to label myself. This is problematic for a few reasons, not least that it's not for her to decide. It's our own decision whether it's something we want or need.

7. Under the UK's Equality Act 2010 a diagnosis is irrelevant when asking for accommodations at work. As long as you meet a set of criteria your workplace are legally obliged to offer reasonable adjustments for you with or without a formal diagnosis.

8. Some autistics might feel shame or fear around getting officially diagnosed. This could be because of how they personally view themselves and/or autism, it could be due to family pressures, or any number of reasons that they might want to quietly keep their identity to themselves.

9. Some people simply might not want to chase a formal diagnosis, but be content in self-identifying as autistic. Fun fact: Tim Burton has identified as autistic for years, despite not being diagnosed.

10. Nobody knows you better than you!

There is concern within the neurotypical community that with self-diagnosis of autism people will use it as almost a fashion statement, or irrationally jump to conclusions about their own neurotype. I think these concerns are quite reasonable if you're looking from an outside perspective like neurotypicals will be, so I wanted to quickly address both sides to close this post. I want to reassure neurotypials that jumping into a self-disagnosis like that is a rare occurrence. While I'm not saying that everybody who self-diagnoses does so correctly, it's usually more about identity and isn't something that's taken lightly by most people. We take a lot of time, research and soul searching before we diagnose ourselves. And that leads me onto my point addressed to self-diagnosing autistics or those considering it. It's best to take your time and really think and research what autism is and whether you identify as autistic. There are a ton of autism resources online in the form of blogs (like this one!), YouTube channels, Facebook groups, Twitter hashtags and so on that are dedicated to helping anyone and everyone understand and accept autism. There's nothing wrong with self-diagnosing, but all I'm saying is do your research and stay informed.

If this list of reasons for self-diagnosis being valid has been helpful please click Subscribe at the top of the page and follow me on social media. I'm @DepictDave on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: "World Wide Web" logo (a black globe logo with "WWW" running through the middle) on a white background with "Autism" underneath it in rainbow colours, and "Self-Diagnosis" beneath that in black text.]

Anxiety

If you're a regular reader, or if you've read some of my older posts, chances are you'll know that alexithymia is one of the autism-related conditions I've got, which basically means I have difficulty expressing my own emotions in words, and sometimes even understanding them at all. So with that in mind it's hardly surprising that I'm only now starting to realise that I suffer more with anxiety than I ever thought I did. It's funny how things like this can be there and affect you without you even realising it. I can only remember a couple of times where I've noticed the classic symptoms of anxiety such as nausea, sweating palms and so on.

I've never been the most confident of people but I think there's much more to it than that. I'm always doubting myself, wondering if I'm doing the right thing, wonder if I/what I'm doing is good enough etc. For example, most of the time when I hit the Publish button on a new post I immediately wonder to myself if I've just written a load of crap. Someone on Twitter a while ago once said something that resonated with me quite a bit. They said that perfectionism isn't good because it's often driven by anxiety. I consider myself a perfectionist and I never thought of it like that before. One of my old jobs was preparing route packs for a distribution company and my my supervisor once praised me on how immaculate they are, but said I'm making them too perfect and spending too much time on it when I should be getting each one done as quickly as possible. This is most likely driven by anxiety that I want to do the best job I can because I don't want to get in trouble so I make it as perfect as I can, but that takes more time than they like. I ended up being made redundant from that job but my perfectionism isn't something I've ever been able to change. I'm very rigid in that sense, which is a classic autism trait. When I do something I has to be perfect, and more importantly it has to be right.

As far as I can remember I've always been one to look quite negatively on myself as well as things that could happen. If there's something that I can see a potential negative outcome for I usually spend a lot of time thinking "what if" although I like to think I'm also good at balancing out the positives and negatives and looking at the probability of each outcome. Whenever I get a notification for something on my phone, if the notification shows the first few words of the message I usually have a feeling of dread as though someone is definitely going to have a go at me, or give me some bad news or something. Somehow that doesn't tend to happen if it doesn't show the start of the message in the notification, and of course my feeling of dread is always wrong. There was one time recently where I'd done something wrong that annoyed my wife, and I spent a while thinking I'm a moron and what if she hates me and all those kind of things. This is when the logical thinking kicks in - sometimes on its own, sometimes deliberately. I start thinking that she's human and that she's an emotional and anxious person herself, and she'll calm down eventually, and whatever I did definitely doesn't warrant a divorce. I know she reads my blog so I just want to quickly clarify that I've never thought she was going to divorce me, but just using that as a worst case scenario that I can rule out to reassure myself.

When I first asked my GP back in 2017 to refer me for a second opinion on an autism diagnosis she refused and gave me the details for a self-referral mental health service that I then contacted, and they concluded that I had social anxiety. While I don't deny that I'm very socially anxious the help they gave me was a waste of time mainly because autism still wasn't addressed as the underlying cause of it. You may be wondering what difference it makes as autism isn't something to be treated or cured, but to a certain extent a diagnosis of autism can make a world of difference because it can be very validating and gives a much simpler way of explaining how you are to other people: "I'm autistic." Not that it solves anxiety - social or otherwise - but it certainly helps in my experience. They booked me in for CBT therapy and after a couple of months I realised it wasn't working and stopped. Shortly after that I went back and saw a different GP who then gave me the referral that lead to my diagnosis.

At the moment I'm fine with my anxieties because they don't cause much of an issue, but who knows - after lockdown is over my situation will most likely change so I may need to revisit CBT or a similar therapy depending on how things go. At the time of writing my employer are expecting me and the rest of my home working team to return to the office after lockdown (I've worked from home for a couple of years and we were supposed to return to the office in early April until the pandemic happend). At lot of people have come and gone in the office since I started working from home, so it'll be like going into a completely new environment when we eventually do go back. With that said, my son will be starting school in September which might give me more downtime to decompress and process things, so we'll have to see how it goes.

So there you have it. It's definitely possible to have anxiety without realising it, and I think it's safe to say that goes for almost any mental health issue as well. I'm still unpacking my anxieties bit by bit, but I hope what I've unpacked so far has been insightful and interesting. Please click Subscribe at the top of the page and follow me on social media. I'm @DepictDave on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: Silhouette of a person on a chair, hunched over slightly holding their head. There are bubbles showing thoughts entering their head including "Don't," "Can't," and "What if..." Under the silhouette is the word "Autism" in rainbow colours and "Anxiety" in black under that.]

Racism In Autism

I had originally scheduled a post on insomnia for this week, but with everything going on with Black Lives Matter and all the protests I thought it was important to address it now, as well as how racism had manifested in autism.

Obviously there are individual autistics who are racist just like there are individuals of every kind who are racist, and just like there are good and bad people in a more general sense, but what I'll be discussing here is the racism (whether intended or not) within the autism diagnostic process.

The diagnosis of people with autism has always been heavily biased in favour of white boys and men. I think the earliest we can look back to find the root of this is to the 1930's and 40's with Leo Kanner and Hans Asperger. I explained in a previous posts about how Hans Asperger worked closely with the Nazis who were a heavily racist German political party aiming to establish the German population as a superior race by eradicating others, famously including Jews. I remember someone saying to me years ago that their aim was to create a race of purely white skinned, blonde haired, blue eyed humans but now true that is I'm not sure.

With Asperger's heavy influence at the beginning of our understanding of autism, and the much more racially biased nature of the mid 20th century in general, it's little wonder that racism stuck around in the diagnostic system for such a long time. If I'm honest I do sometimes wonder how nowadays we're only just starting to properly understand autism, but I guess any progress is good progress, even if it's slow.

So how are people of colour affected in the modern day in terms of getting an autism diagnosis? First of all there's medical bias that could stop them from getting a diagnosis. This could mean for example that a doctor (especially an older one whose knowledge might be more outdated) may be may not refer a black person to an assessment service because they don't believe that they are - or even can be - autistic. Just to give an insight into how real medical bias is, my wife is a student midwife and highlighted this article to me which explains that women of colour are 5 times more likely to die in childbirth than white women. Obviously this is a huge difference and is clearly unacceptable.

Another factor that affects the diagnosis of people of colour is their location. One of the many things I learned from watching Netflix documentary 13th is that the "war on drugs" in the US was designed to target black people who were predominantly poor. So in relation to autism, especially in countries like the US where medical and health services are expensive, the autistic person is less likely to be able to afford assessment for a diagnosis.

The final point I want to make (although the points I'm making here are by no means exhaustive) is that other people's reactions and attitudes might be more likely to put them off seeking diagnosis. This ties in a bit with what I mentioned earlier about the attitudes from the 30's and 40's lingering for a long time. Their peers, family, colleagues and so on might have outdated views which can cause disheartening, or even worse it can cause argument and fall outs with the people they confide in.

All of these issues that I've discussed are reasons that we need to educate and inform the whole of society, which is absolutely what I aim to do with this blog, as do lots and lots of other autistic advocates through their blogs, YouTube videos, social media accounts, books etc. I feel like now more than ever education is needed around how autism presents and affects all races, genders, ages... everyone! As a final note I think it's important to share some links to black autistic advocates' pages. The best ones I can think of are AutisticTyla and Aspienelle. These links are to their Instagram accounts. Let me know about any more black autism advocates in the comments or on social media!

I really, really hope I've helped with this post. I know I say that about every post, but this one in particular is such an important topic as we're essentially missing out on a whole section of the autistic populaton. Please click Subscribe at the top of the page and follow me on social media. I'm @DepictDave on Twitter, Facebook, Instagram, Pinterest, and you can buy me a coffee at my Ko-Fi account here.

[Image description: The Black Lives Matter logo (a black fist raised upward) with the infinity loop in white on the wrist to symbolise that black lives really do matter whether disabled, autistic, otherwise neurodiverse, or anything. This is on a white background and underneath it is the post's title with "Racism In" in black, and "Autism" in rainbow colours.]

Election Results

It's the day after the 2019 UK General Election and I along with many people am crushed by the result. I genuinely don't know whether to lose faith in the British public, or whether to call foul play on the Tories. Either way, the election result plus the fact that I'm currently on my way home from a week's holiday means that I haven't got the spoons today, but I wanted to quickly address what the election result might mean for autism.

The first and most obvious thing is the letter to the party leaders from the National Autistic Society that I linked you to in a post a few weeks ago. It's been a while since I checked the number of signatures on the letter but last I checked it was about 13,000 which is well over their 10,000 target. Regardless of the number of signatures, I highly doubt that it's going to get a look in with Boris still in power. The letter was asking the election winner to make publishing the updated autism strategy a priority as soon as the election was over. As pessimistic as this sounds, I'd be highly surprised if the Tories even give it a second thought, and that saddens me.

The other effect it could have is when the NHS is inevitably sold to America it's going to make assessment, diagnosis and support of autistic people a hell of a lot harder... As if it's not already inaccessible. I explained to someone on Twitter that just because assessment through the NHS is free it doesn't mean it's accessible. I had to ask my GP multiple times for referrals. My first referral was unsuccessful because the assessors didn't believe me, and although my second referral was successful it took 18 months from being referred to receiving my diagnosis. The wait in other parts of the country is longer. Autism services in the UK are massively underfunded and under prioritised making it inaccessible as it is, never mind once we lose free access to NHS services. It scares me where the Tories' policies and attitudes will take us when it comes to autism. I count myself very lucky that I got diagnosed when I did.

Don't get me wrong, not all autistics want or need a diagnosis but the ones it would make a difference to are the ones who are going to suffer. If there's a silver lining it's that as a counter to the government's attitude towards disability, the autistic community (and probably the disabled community as a whole) will most likely band together, advocate, educate, spread awareness, spread acceptance and continue to support each other even more. I've got no faith in the government but I've got every faith in us as a community and I hope I'm right.

That's all I'm going to say this week. If you enjoy my blog and find it interesting or helpful please hit the subscribe button at the top and follow on Twitter @DepictDave. I guess the message today is be kind to each other and support those who need it.