Group Support Session 3 - Sensory Processing & Repetitive Behaviours

First of all, sorry for the late post. I've been mega busy with family life and work so didn't get the chance to write a post yesterday.

This week's support session was on sensory processing and repetitive behaviours and I quite enjoyed the session this week. We started off by having everyone talk a bit about  their favourite sensory experiences. I explained that my new favourite thing was my sequin snap band that I got from eBay after discovering them in the sensory box at the sessions. I also explained that I'm quite a heavy chewer - which is why I've always got my button necklace from Chewigem on me - and I contemplated whether that's related to why I have a habit of over eating, or whether it's to do with the taste, or both.

We covered all the difference senses and how they can be either under active (hyposensitive) or over active (hypersensitive) in autistic people, or even both! I always thought there were only 5 senses, but it turns out there are actually 7 or 8 senses depending how you look at the 8th one. The senses are:
1. Sight
2. Taste
3. Smell
4. Sound
5. Touch
6. Vestibular
7. Proprioception
8. Interoception

The first 5 are self-explanatory, so lets just go over the last 3. Vestibular is the sense of balance and spatial awareness, which helps to coordinate movement with balance. Proprioception is the sense of position of the parts of your own body in relation to the rest of your body, as well as the strength and effort that's put into movement. Interoception is the recognition of the body's signals such as hunger, full bladder etc. One of the coping strategies that we were given to deal with sensory issues is to develop a sensory profile. This is basically just knowing what you're under/over sensitive to in relation to each sense, but they gave us a handy table for us to write it down on, which I'll include at the bottom of this post for you.

There was a brief section about stimming where they explained that it's self-stimulatory behaviour which is used as a coping strategy to help suppress pain, help with calmness, or just simply for sensory stimulation. A stim is defined as a repetitive action or movement. For example, as mentioned before I chew a lot, and I now also play with the sequins on my snap band rubbing them back and forth to change them from black to white and back again. These are among several other things I do. Stimming is something that everyone does in one way or another, but it's usually more obvious, frequent or intense in autistics. We were encouraged to try to be aware of our sensory diet in that we all need a certain level of sensory input on a regular basis, just like we all need to eat food on a regular basis. One particular example of how you can take in sensory input is apparently yoga because it includes the vestibular and proprioceptive senses which can be the most soothing. Everybody is different though, so it's best to find what works for you.

After this we took a short break and then moved on to repetitive and restrictive behaviours, but we were running behind at this point so didn't have the time to go through it in as much detail as we probably should have. We first covered the different types of repetitive behaviours which are:
- Repetitive motor movements (hand flapping, rocking bouncing etc)
- Fixed routines and rituals (insistence on following rules, doing things the same way each time, resistance to environmental change)
- Restricted/fixated interests (for example my interest in wrestling where I can spend hours on end watching/researching/listening to wrestling themes and doing nothing else)
- Sensory seeking/aversion (Seeking out certain senses that you enjoy or find soothing or conversely, avoiding those that you don't)

We went though some pros and cons of each of these 4 types and we established some strategies for finding balance between these behaviours and the rest of everyday life. These can be simple things such as setting a timer, exploring alternatives, asking for help/advice from other people, making plans/scheduling etc. It's also important to be open to and accept other commitments as these are just a part of life and need to be given a time and a place just like your interests and other behaviours. A couple of the examples I gave of routines and rituals are that when I make a cup of tea I make sure I let it brew for exactly 5 minutes (Alexa comes in handy for that!) before I take the tea bag out and add the milk. I also insist on using the document feeder on our printer when I'm trying to scan something in because the idea of it is to make things quicker an easier. But because our printer is a bit crap it doesn't always work, so I end up spending ages trying to fix it to scan my things in through the feeder when by the time I've managed to fix it I actually could have scanned it in manually on the scanner bed in about half the time. These 2 things are the main things that annoy my wife but I insist on doing them because it's how they should be done. I can understand her getting annoyed about the printer because in reality I'm wasting more time by trying to do it the quick way, but I just see letting a cup of tea brew for 5 minutes as doing it properly. I think it does taste better and it also gets more caffeine out of it. And I also think that if you put the milk in first you're a monster!

Here's the table we were given as mentioned above to help profile your sensory preferences and needs:

Group Support Session 2 - Social Communication & Interaction

This week is week 2 of 5 of my group support sessions, and this week's focus was social communication and interaction. Socialising and people skills are the areas I think I struggle with the most in terms of my autism so I was looking forward to this one to see what I could learn. There was 1 more of us in the group this week than there was last week, and we found out that 1 of the remaining absentees has had to drop out due to work commitments. So that just leaves 1 more member of the group who we've not met yet. I think it's interesting that out of the 4 of us that have attended the sessions so far there's only 1 woman. I think that speaks volumes toward the ratio of males to females that have been/are being diagnosed. Autism in women and girls is becoming more recognised and diagnosed more often, but we've got a way to go yet.

This week's session was mostly just things that I already knew, but that's just because I've tried to be as involved as I can be in the online autistic community via the #ActuallyAutistic and #AskingAutistics hashtags so I've learned a lot from that, and I also did a lot of research while I was waiting for my referral.I got the impression that the other 3 members of the group might not be so involved online, in which case it was probably more helpful for them than it was for me. Having said that though, there were a few bits that I learned and will probably find helpful. One part of the session was getting us to think about and write a short list of our social strengths and weaknesses. I literally can't think of any actual strengths but I listed 3 weaknesses. What I put down under the strengths column (just so that I had something to put there) was that I feel more comfortable in places like a work environment where we're there for a reason, so to me that means I don't have to socialise because I've got the excuse of having work to do. In contrast to that, if I'm out in a social or informal situation I feel a lot more pressure because the reason for being there is to be sociable. This is why I don't like going out any more, and when I do go out to a gig or to the wrestling or something like that I usually go on my own.

There was a video about making and maintaining friendships by Robyn Stewart which can be found here, and then some tips for developing friendships. The advice is all good but even long before I knew I was autistic I've always found that this kind of advice is very vague and I've always struggled to translate it into my own personal situations to help me. They gave us this link to a page on Social Isolation from the National Autistic Society's website, which contains a lot of information and resources to help with socialising. The other problem for me personally is that I genuinely don't have time to be sociable. In a typical day I get up on a morning, look after my kids all day, go to work in the evening and then go to bed for a few hours. Maybe when the kids get a bit older and start school full time I might have a bit more time that I can commit to improving my social skills but at the moment I can't fit anything else in.

We were introduced to the concept of social thinking, which is a process to help social development and we were given a link to a company also called Social Thinking. It seems to be an American company offering clinics, conferences, e-learning modules etc, but we were just given the link for information more than anything else I think as there does seem to be a lot on there.

The last part of the session was covering the spoon theory, which I'm familiar with but only recently, and also the social battery, which is basically just another metaphor to help explain the same as the spoon theory but in a different way. There's yet more links that we were given in this bit. Admittedly I haven't had the time to look through them all yet but from what I gather they could potentially be interesting reads if nothing else. This one is an article explaining Christine Miserandino's personal story that lead to the origin of the spoon theory. The other one is a link to a blog by Nell Goddard where she explains the social battery as experienced by introverts such as myself. This one seems particularly interesting and I'm going to make the time to have a read of it before long. Lastly, we covered a brief bit about masking which tied into spoons/social battery by explaining that making an increased effort to appear neurotypical can be very draining and that it's important to take time out to be yourself when you can to prevent burnout.

I hope that by covering my support sessions in the blog I can help people find a bit of understanding of themselves or others, and that I've offered some helpful resources for that.

Group Support Session 1 - Intro

When I was diagnosed Autistic in December they offered me some support sessions (either group or one-to-one) to help me get my head around my diagnosis. I never knew what I could/wanted to gain from these support sessions so I never took them up on their offer until recently when I had a phone call chasing up whether I'd be interested in sessions starting 29th May. I still didn't know what there was to gain from them, but a number of people have encouraged me to go to the sessions so I decided if I'm not there I can't gain anything and went for it.

My first session was 2 days ago and it was interesting despite being mainly an introductory session so that we all get to know each other and have an understanding of what we'll be covering over the remaining 4 sessions. There were 3 of us there, plus 2 adjudicators. There's actually 6 of us in our group, but this week one of them couldn't make it, one was ill and the other was AWOL leaving just the 3 of us for the time being. I was just happy that I met somebody else who chews like me!

Bits of the session itself were interesting. We covered the reasoning behind some of the tests that were done during our assessments, which was nice to get some insight into what they were actually looking for and how - half of which I didn't pick up on at the time, but I guess that's the point.

I'm looking forward to next week's session to get properly into the material and see what I can learn. If I remember rightly, I think it's about the social and relationship side of autism next week, which is the bit that affects me most. I just wanted to do a quick blog post about this week's session just to keep you all updated, and because I'm having a busy day today so haven't got the time to write a usual lengthy post. I'll probably blog about next week's session next week, so stay tuned for any useful insights I might gain in the coming weeks!

My Dream Job (And Why I Can't Do It)

As a kid the career I always wanted was to be an RSPCA inspector. I've always loved animals, which I gather is something that a lot of autistics have in common. In fact, I've always preferred animals over people and I wanted to do anything I could to help look after and protect them. So I left school with a career as an RSPCA inspector firmly in mind and went straight into college for 4 years to end up with a Foundation Degree in Animal Management. After I left college it became apparent that the kind of job I was looking for in the long run was almost nowhere to be seen in my local area, so in the end I settled for a while in retail (and hated it) before transitioning into office work.

It wasn't until I discovered that I might be autistic that I started to think about whether I would have actually been able to do the job as an RSPCA inspector even though realistically the boat on chasing that dream was already long gone. As I started to learn more about autism, and therefore myself, I started to look at myself side by side against the requirements of an inspector and slowly realised that even if I managed to find that job or similar jobs available I most likely wouldn't have been able to do it. When I was younger the only thing that I thought might have been an issue was that I'm not a strong swimmer. I can swim but not very well, so I wouldn't be the ideal candidate for rescuing animals out at sea. Rescuing animals is pretty much the only thing people think of when they think about what an RSPCA inspector does, but there's so much more to it than that.

Because of my autism I struggle to interact with other humans and I have little to no interpersonal skills. People skills are an absolute must for the job because while it's all well and good going around saving animals' lives it also means that I would come across some hostile owners/keepers of said animals. I'm absolutely useless at negotiations and this would be a key skill that I'd need if I was to successfully and safely rescue animals from abusive, neglectful or otherwise hostile people. As well as dealing with owners I'd need to liaise with police from time to time as well as any other relevant authorities, managers, event organisers and so on.

Executive functioning would have caused me some issues when it comes to all the paperwork and general organisation that I'd be responsible for. Add this to the long and unsociable hours and it'd soon turn into a minefield! Obviously I wouldn't have thought of this when I was a kid but these days I've got kids of my own that need me so that's another reason that it wouldn't work. It was bad enough when I used to work in the office because I used to set off to work before they were even awake, and then by the time I got home I'd be able to spend maybe an hour with them - or 2 if I was lucky - before their bed time. Those were set hours that I was working at the time, so the varying hours of an inspector would cause chaos with our family.

When you apply to be an RSPCA inspector there's always the possibility of being posted somewhere far away meaning you might have to relocate to take on the job. I didn't think this would be an issue growing up, but again as I learned more about myself (particularly in the last couple of years) I've started to realise that I'm not as independent as I first thought I was, so thinking about it these days I really don't know if I would have been able to manage relocating had I applied and got the job before I met Sarah and settled down.

If you asked me today what my dream job would be I'd say pro wrestler. In fact, I wouldn't even be that bothered if I did it as a career, it's just something I want to do regardless of how far or how serious I get with it. I did look for a wrestling school when I was in my early 20's and used to go to the gym 5 times a week, but I couldn't find one near me and that's my biggest regret these days. Over the last few years I've started going to independent British wrestling shows quite a bit, and the main promotion that I follow does training classes in Leeds. It's just typical that when I finally find one that I could go to it's too late because my life has changed so much so I no longer have the time or the money to commit to it.

Identity

Many autistics consider autism to be an intertwined part of their identity rather than an additional condition that plays no part in defining them as a person. I'm one of the many who identify as autistic and I'll always use identity-first language rather than person-first language when talking about myself and other autistics, although I'm quite relaxed in what language other people use when talking about me.

Just for clarity:
Identity-first language = autistic person (e.g. "Dave is autistic")
Person-first language = person with autism (e.g. "Dave has autism")

Because I was late-diagnosed in my 30's and I'd never even considered autism as a realistic possibility until my mid-20's I obviously haven't always had that identity. In fact, until recent years I used to feel a distinct lack of identity. I spent my first quarter of a century or more trying to figure out who I am, wondering where I belong and searching for something that made me valid.

Growing up there were 2 main things that reflected who I was and who I wanted to be. The first thing was my overwhelming desire to meet somebody and form a serious romantic relationship. I was lagging behind everybody else when it came to building relationships and this was very frustrating for me until I met Sarah. Now that I'm married with kids I've got everything I ever wanted and I've become what I always wanted to be in that I'm a family man; happily married and dad to 2 amazing kids. I won't spend too much time dwelling on the romance side of things because I've covered it before in previous posts, but I always wanted that to be who I was.

The other side is who I was/who I am, and this was something that's always been under the surface but was never realised or properly identified until I was waiting for my autism referral. For as long as I can remember I've always known that I was different to other people, but I'd never known why until at least my mid-20's when we realised that autism was a very real possibility. And even then, it took a while for me to come to terms with it and begin to identify as autistic. I expressed my differences with other people through my goth phase in my late teens and early 20's. I would do whatever I could to stand out by wearing nail varnish and eyeliner, I grew my hair long, I would look for the most unique clothes I could find which were usually covered in chains, buckles and straps. I even bought a chain mail vest just like the one Jack Black wore in the Master Exploder scene from the film Tenacious D: The Pick Of Destiny.

[Image description: Animated gif of Tenacious D on stage during the Master Exploder scene from Tenacious D: The Pick Of Destiny. Jack Black is wearing a chain mail vest and knocks down a flaming microphone while Kyle Gass plays guitar next to him.]

There was definitely an element of my goth phase being an attention thing, but looking back I'd say it was more of a search for an identity. I knew I was different from everybody else but didn't have the knowledge of autism to establish it as the reason. I've never liked bright colours and always much preferred black. I was newly into rock and metal music as I'd started to discover that there was more than the mainstream musicians that were in the charts. So I took my inspiration from bands like Tenacious D, Three Days Grace, Nightwish and Within Temptation, and I turned it up to 11 to express that I am in fact not like anybody else. There was a lot of criticism and because I didn't know what made me different I couldn't explain why I dressed different other than just to be different. Since I settled down with Sarah and since I started to identify as autistic I really don't feel the need to dress gothic any more as I understand who I am now and I'm comfortable and happy with myself. Sarah actually said to me recently that if I wanted to start wearing nail varnish and things again I can, but I really wouldn't want to these days. I do still listen to rock and metal, and I do still wear mostly black (even in summer!) and I do occasionally think about growing my hair long again but I don't really consider myself a goth any more.

Having an identity is important to everybody and when that identity hasn't been discovered yet or is suppressed or ignored it can be very stressful for the person. It's made more complicated by the fact that your identity isn't necessarily just one thing - it can be a combination of multiple aspects of you and your personality. But in my experience your true self will always come out eventually in one way or another, it's just that it could take a while perhaps waiting for the right person or the right time/events to bring it out and let you be yourself.

An Autistic Point Of View - The Campaign To End Loneliness

Earlier today I saw a video on Twitter from the Campaign To End Loneliness. This video is entitled Lets Talk More, it stars stand-up comedian and regular Mock The Week panelist Andy Parsons, and is aimed at getting people to talk to each other more with the goal of building little connections that help to combat loneliness. If you're interested in watching the video please click here. Let me first say that the idea behind the campaign is great, and I'm sure that with a reported 9 million people in the UK experiencing loneliness it's certainly something that can be considered a problem. However, my first thought upon seeing the video was that while most people would more than likely be happy to have little small-talk conversations with each other and would feel very comfortable with it, people like me definitely wouldn't. This is something that's common in the autistic community.

Seeing the video on Twitter earlier today was the first I'd heard of the Campaign To End Loneliness, and having researched the campaign a little bit online it does seem aimed more at helping older people, who make up 4 million of the aforementioned 9 million lonely people. This focus on the elderly does make more sense to me than what I initially took from the video because the elderly come from a pre-internet and pre-social media generation where people did talk to each other a lot more than they do now, but there is still the question of the remaining 5 million people that they're aiming to help. I personally don't like to interact with people where I can avoid it. The reason I prefer this is because I (as well as many other autistic people) feel more alone when I'm with people than when I'm actually on my own. Even when the conversation is going well I still often feel that I'm not connecting with the people, I start to wonder what the point in the conversation/situation is, and I soon decide that I don't want to be there.

It could be for a few different reasons that this happens but I think the main reason is that I have a lack of control over the other person/people. Not that I want to control people in the sense of what they do, but because other people aren't me I can't control where the conversation goes. I often find that the person I'm talking to doesn't like wrestling or symphonic metal, and I don't like whatever the other person likes - if I'm talking to a bloke then they usually drag me into a conversation about cars or Call Of Duty or other typically laddish things that are really, REALLY not me.

The problem that I find with campaigns like this is that they seem to follow a very rigid way of thinking, which is based on the majority and usually not flexible for the rest of us. When I first watched the Andy Parsons video it came across as very much a case of "You need to talk to people, it'll be good for you." While I'm confident that's true for most - if not all - neurotypicals, we autistics don't seem to have as much to benefit from it. Firstly there are those of us like me who would just plain rather not interact with people where we can help it. I personally am happy with the company of my wife, my kids and my cat, and that's it. I'm happy for my wife to have her friends and family round and things like that because it's in a familiar environment, but in terms of whether I specifically want to see anybody myself the answer is no.

There's also the unavoidable issue of interaction between autistics and neurotypicals which is something of a double-edged sword for us. Autistic masking is a survival strategy that many of us have learned to do so that we blend into the neurotypical world and can get on with our daily lives. Masking does however come with a cost. It can cause mental health issues due to repressing our true selves, and it can also use up lots of our energy and lead to meltdowns, shutdowns, dissociation etc. The other side of the double-edged sword is that if we don't mask and we try to make these little connections with everybody else as the campaign is suggesting, we risk a negative reaction from neurotypicals, being labeled as weird (or worse!) and being ridiculed or even threatened for being who we are. So oftentimes, as an autistic person it's not worth making these connections with the rest of society even if we wanted to.

The final point I wanted to make is what happens when neurotypicals try to start an unwanted conversation with autistics. Obviously we live our lives just like everyone else and we need to go out and about for various reasons where we're exposed for better or worse to the neurotypical world. If somebody tries to make small talk with me I generally don't know what to do. I handle it by answering their question/statement but not giving much else in return. I do that so that I've tried to not be rude by ignoring them, but also so that they've got nothing else to continue the conversation with in the hopes that it stops. But then that leaves me wondering if I've just been a massive bellend to them by not giving them what they wanted. I do suffer occasionally from social anxiety and I've had incidents where I've been to gigs and people have dragged me into conversations, and the effect it's had on me is that I've felt sick from it, I've felt cold yet sweaty, my mouth's gone dry and so on. Conversely, if I'm at work and people try to talk to me I manage ok with it although I'd still rather keep myself to myself. I think that's because when I'm at work I'm not there to talk to people or make friends. We're all there to do a job so I don't mind just making an excuse to cut the conversation short and get back to work as it feels like a helpful get out clause.

So the Campaign To End Loneliness is no doubt well intentioned, and I'm sure it'll help a lot of people who want and/or need it. But it needs to be executed carefully to keep in mind the needs of those of us who don't want direct human interaction, especially with strangers. The campaign could probably do with the inclusion of education on who to speak to, when and how. For example, there are a lot of autistics who put up barriers in public such as wearing headphones, dark sunglasses and other things, but all too often these barriers and signals not to approach are either not understood or are completely ignored. Ignoring barriers like this seems particularly common among men towards women who have their barriers up. All I'm saying is do what you can if you're trying to make more connections off the back of the campaign, but regardless of who you or the other person are just be mindful and think about whether they're likely to want to interact. They might have barriers up that may seem abnormal or unreasonable to you, but you don't know what their reasons are. And if you do find yourself naturally in a conversation with someone, be kind and thoughtful as there's a strong chance that their brain works differently to yours.

Autism At Work

Autism can often be a challenging thing to deal with in the workplace. Difficulties can occur every step of the way from getting an employer to hire you (especially if you disclose to them in the recruitment process that you're autistic), to carrying out your daily role if your employer is unwilling to make any adjustments or offer any allowances. Needless to say, all employees should be given the same chance to perform to the best of their ability in their role regardless of who they are or whether they have any physical or mental restrictions. Employers aren't always as flexible as they should be in providing these allowances though, and this is something that I personally have battled with for a year or so now (although I won't go into any specific details here on the blog).

It can often be the case that the simplest of things can make the biggest difference. Does the employee struggle with sensory overload from a noisy environment? The employer should let them wear noise-cancelling headphones. Does the employee need a little more time to make sure they're doing their job properly? The employer should provide a bit more time and/or offer some flexibility in any targets. Does the employee struggle with verbal interactions? The employer should allow as much interaction as possible via e-mail, text or other messaging channels. Just as a side note, I do often struggle myself to process things quickly enough or to get my point across properly in verbal conversations so I've found messaging and e-mails to be very helpful. I'm lucky enough that I work in webchat, which makes my role a largely digital one with minimal face to face or verbal interaction.

And it's not just autistics with a formal diagnosis who should be eligible for adjustments. Self-diagnosis is valid for a number of reasons - especially where it's difficult/not possible to get a formal diagnosis - and at the end of the day, who knows you better than you! In the UK the Equality Act 2010 states that a diagnosis isn't required for reasonable adjustments to be made at work in relation to any disability whether mental or physical. All of the following 3 criteria do have to be met:

• It has to affect normal day to day activities outside of work
• It has to be substantial
• It has to be either a long term condition of more than 12 months, or be life-long.

As long as you meet all of these 3 conditions your employer legally can't refuse to put reasonable adjustments in place for you. However, if they do there are still options available to you such as contacting citizen's advice, ACAS, your union if you're a member of one, or raising a formal grievance.

Autism is different for everyone and it can often be both a gift and a curse.When it comes down to it, we autistics often have skills and qualities that set us apart from our neurotypical colleagues but we can sometimes just need a little bit of help to unlock the potential that it gives us. Sometimes this is as simple as reducing outside distractions and can work wonders for productivity, thus making us hugely valuable employees given the chance.

The information in this post is based on UK law and my experience as a UK resident. If you live and/or work outside of the UK please look to your government or any local resources available to you for support and guidance if you need it.