Naturally we include the obligatory autism reference to a piece of jigsaw puzzle!

Because obviously we're the forgotten about pieces of puzzle that go under the sofa yet without us, the jigsaw is incomplete.

Jigsaw
Because you know, its a website about autism so there's got to be the obligatory jigsaw reference!

Friday 1 March 2024

Masks: to wear or not to wear

I thought I better complete this entry from 2020 that I started....

 I want to make clear from the outset that I think people should wear face coverings if they can reasonably do so in their bit to tackle Covid-19.
I am extremely aware that if we don't all pull together, we can't get our lives and society back to some state of normality. 
That said, for some people, wearing a face-covering can be significantly distressing.

And this is me. I went shopping yesterday and today I have a migraine. I feel rough. It is the stress of yesterday that has come out. I am so used to migraines that I do find an ability to get on with it unless my vision goes, hence my ability to write this now. I'll probably pay for it later... But anyhow...

I find the masks very difficult to handle. It is not because I am bothered so much about how I look but its the sensory issues that they cause. 
I will go through in turn the different sensory issues:

Taste:
This one doesn't apply to me!

Touch:
The mask or face-covering obvuiously touches one's face. I find this difficult because the sensation is very overwhelming and smoothering. It covers most of my face and I can feel claustrophic by the fabric. I also wear glasses so having the elastic around the ears in addition to my glasses feels too much. I am sure we all dislike heat from the masks too and that can add to the claustrophic sensations.

Sight:
As I wear glasses, I aleady have to spend a lot of mental energy trying to look beyond the frames of my glasses I see around the edges of my vision. I am used to it but it is something I have had to develop a tolerance to over the last 20+ years. I find the additional visional information of the top of a mask really difficult and it further makes me feel smoothered. Add in the problem of glasses fogging up, its rather disorientating.

Hearing:
I can't well explain it but I feel like my hearing is impaired by the mask wearing. I am finding it harder to communicate with people even though my ears are not  covered. I don't think it is as simple as the other person's voice being muffled by their mask. I am theorising that my brain is trying to commodate the sensory overload by turning off some senses and hearing is my causalty.

Smell:
I am not sure about this one. Reduction in smelling is not providing to be a problem. It's just important that the mask is clean so it doesn't get smelly and fabric softener used is not too overwhelming.

The sense of space (Proprioception):
I am definitely feeling clumiser in the way I move around and not sure where I am in relation to other objects. I cannot comphrend how anyone can drive a car with a mask on as it makes me feel like I might drive into something!

The vestibular system (balance):
I feel a bit out of balance because I feel my vision is compromised as well as my sense of touch. Its a surreal feeling as I regain my sense of balance (it isn't great usually!) upon removing my mask. It is weird to say that wearing a mask makes me feel a bit dizzy.

Internal feelings (Interoception):
The sensory overload situation caused by wearing a mask makes me much more hyper sensitive. It means that I am much more intolerant to my internal system, i.e. feeling hungry, needing the toilet, pain, etc and being unable to immediately tend to those bodily needs will make me a seriously grumpy person. It trigggers a strong desire to run away and deal with my internal needs to want to right myself and get back to a calmer more peaceful state.

Conclusions
What do I do?
Masks upset me. A lot. I try my best to not go out when my tolerances are low as I am then not in a good place to tolerate a mask at all. I have to keep my shopping trips short and that is annoying as I can't buy what I need in one hit.

But I am very aware of the need to not spread the virus either. What I have decided to do is make the right and responsible lifestyle choices so I am not mixing with groups of people and doing high risk activities, that way if I had to go shopping not wearing a mask as medically exempt, I can be confident I have not created more additional risks to people. 

The main issue is that people aren't very understanding of hidden disabilities on the whole. I have read the nasty comments about disabled people staying at home. The other day I was verbally confronted by an angry cafe worker telling me I had to leave the premises as I wasn't wearing a mask whilst his was under his chin, as he walked towwards me violating the 2m distance rule. There was no signage about mask wearing. I haven't the energy to deal with such idiots who think we can mindread their new rules of how to deal with a self-serve fridge of soft drinks without any notices. Its put me off entering a place where the rules aren't clear. Heck, its made me feel very uncomfortable for not wearing a mask for the risk of people having a go at me. 

Frankly, that cafe worker was an idiot. He couldn't see the ridiculous double standard that was literally under his nose.

The main thing I think for someone who cannot always be a mask is to be responsible about it. Keep myself out of high risk germ spreading scenarios, wash hands a lot and purposeful testing so that I never am out and about when unwell.

Monday 5 April 2021

Autistic Community

Autistic community. It's a term that sits a bit uncomfortably with me. It's like everyone who is autistic is part of some homogeneous grouping where we all somehow, across the globe, agree on common issues.

Well, we don't and I'm a bit fed up with people who think we are all united on every single thing. Of course there will be majority views but what I think are the perceived majority views are actually often from the most vocal. They have a lot of time on their hands to shout online who don't necessarily reflect the older demographic, those in employment and those who are not digital natives. And let's not forget our autistic counterparts who will never be able to access social media because their disabilities are a barrier to participation but may yet still have a view no one hears as they can't whinge on Facebook at 3am.

For all those autistic activists who post lots on the Internet about their whatevers, there will be another 10, 20, 100, who frankly don't give a rats arse what our logo is, if it's a jigsaw or an infinity image. It's not a club. I don't need a mascot or a cute branding. I need people to be kind. Are we best represented by blue, red or gold? I'm not a product. 
I understand that some of the imaginary used is problematic, linked with eugenics, autism seen as a confusion and male dominated. However, that's an image concern for charities.
I don't deny it has some indirect impact on me in terms of constructing a harmful identity but I can undo that by promoting autism by being a good person to others. 

So when I go to raise issues about autism at work to HR, I don't go armed with clever slogans and graphics, I go with understanding the law and science. I go with kindness but I remember that we aren't a community. We just happen to share the same cognitive style.

I'm not part of the blonde hair community or the people that like cereal for dinner club either. And I definitely don't want to join the 'people with asthma' league. 
The autistic community is a fallacy and those who speak on its behalf are just sounding their own horns in their noisy echo chamber. Sit down, shut up and listen to those who haven't been projecting their big views at the world via their iPads. You may learn something about priorities and I tell ya, branding isn't the most important at all. 

Tuesday 2 April 2019

World Autism Awareness Week, again.

It's the start of World Autism Awareness Week again...
Here marks more garbage on social media about autism with jigsaw puzzle pieces, vaccinations, Applied Behaviour Analysis, our suffering and cures.

Many of us who live independent lives and "appear normal" have daily struggles that we mask to fit in, to get by. Get aware. Find out about autism first-hand.

Here's a pro-tip. Look on Twitter at #ActuallyAutistic where you can read the postings from autistic people. See their concerns, their joys and life experiences in how autism affects their lives. These are first-hand accounts from autistic people with the cognitive ability to engage on Twitter (although they may not all live independently). It's worth taking a look.

Did you know an agency in the UK government recently discriminated tens of thousands of autistic people with no warning? The DVLA recently then backtracked a decision on ruling autism (and ADHD) was a mental disorder. I had to fill an M1 form disclosing my imaginary drug/alcohol issues and never happened stays in mental hospitals. Failure meant my clean 17 year old driving licence revoked. Thankfully the autistic community lobbied well and the DVLA changed the rules where you must only disclose your autism diagnosis if it negatively impacts on the quality of your driving. Finally some sense.

This wouldn't have happened if those making the decision were aware of what autism actually is (and what it is not). Awareness comes from including autistic people's voices in the services we use rather than people speaking for us.
Don't assume you know what I need. Don't tell me what I need. You might be surprised about I need. Ask.

I'll help you out about workplace reasonable adjustments.
Look at my presentation I delivered at #Autscape, a conference about autism for autistic people: https://lnkd.in/dArS6WW

I may expand on this last point in another entry.

Thursday 1 February 2018

"People who suffer from autism..."

I don't want to get into any discussion on the correct language of addressing those that have/are autism/autistic. I personally identify as autistic and I feel it is a core part of my being but if other people 'fellow sufferers' like the 'with language', good for them.

What I want to look at is this idea of autism and suffering.

There's the view that autistic people suffer, often stated by parents with autistic children and others who work with autistic people. And yes, I tend to agree actually. There are times when I do suffer and it is not society's fault. There, I said it.

I see people from the autistic community (as if there is actually a formal association!) angrily counter that they do not 'suffer from autism'. The argument is that autism is not a disease and we don't have common observable symptoms as such, for there are infinite ways autism can manifest. 

The view here is that if suffering does occur, it's caused by society and the way it is structured to make life more difficult for autistic people than it should otherwise be. This might be the way society can be so sensory overloading and the way neurotypical people communicate that can isolate autistic people from joining in.

And here I say yes, society is not necessarily configured in ways that always work well for autistic people, but let's stop being naive about how autistic people experience the world and the extent to which society can reasonably accommodate us. Society cannot be blamed for everything and autism is not some special gift. Sometimes we suffer and there is no one to blame. 

Let's get real: I don't particularly like supermarkets. I don't like the lights so I suppose yes, the lights can be dimmed for me. I have seen attempts to make shopping more accommodating for people with sensory processing difficulties. My local shopping centre does a once a month low sensory shopping hour but I can't help but think there is no way to please everyone but I guess it might help a few people, so that is good, right? But it just doesn't go far enough for me but I realise to achieve that, it would be totally unworkable.

But there is the thing about supermarkets for me; I don't like the number of things to look at. Visually, shopping is overloading by the vast amount of people about and the huge number of different products to look at on the shelves with their bright colours and different shapes. So to accommodate my needs, turning down the lights and turning off the music isn't going to help me. The retailer isn't going to remove a load of their products to suit me and how would that benefit other people if what they need is removed from the shop floor?

What is the solution? I think we need to be realistic that society can only do so much to help us autistic people get on in life. There are going to be plenty of scenarios where society does not disable us but it is our environment but it transcends society's reach. So yes, I do suffer. I cannot make the birds stop tweeting, turn down the brightness of the sky or remove people around me. I cannot blame society for doing what they are doing and I cannot change my natural environment either. 

But I can find coping mechanisms. I can wear headphones, wear tinted lenses in my glasses and all sorts but we cannot blame society for this. 

Using the examples of shopping, we could turn back the commerce clock to small shops and buy goods each day and reduce choice and raise costs because perhaps 1 in a 100 people in the UK are autistic and a percentage of those people find shopping hard?! No, that's not going to work and therefore we need to understand that we do suffer.

We cannot deny who we are but I think we need to be honest in what we think the sources of suffering are. I for one don't want to stop being autistic but I do want the world to be quieter. If the medical world can one day help me with that, I won't feel shame to admit that suffering. Or admit that I want it to go. This isn't me being a sellout or rejecting who I am but recognising that society can't be blamed for everything. Sometimes the birds just tweet too loud, and wanting to feel it less is okay. 

Tuesday 26 September 2017

'Autism-friendly' Northern Ireland town

So I stumbled on this news article about a town in Northern Ireland that is "autism-friendly":


My first reaction: What the hell?! 

My second reaction: Oooh, is this a town where meaningful workplace reasonable adjustments occur under the Disability Discrimination Act 1995 (The Equality Act 2010 doesn't apply in NI)!!

And....this is where all employees undertake mandatory outstandingly brilliant training on autism that is also personalised to the industry/department/team to support their autistic colleauges?!
I thought not.

So basically its going to be 'autism-friendly', aimed at holiday makers who are families and kids who can go enjoy a sensory garden. Whooopieee! It doesn't exactly offer much to adults who have no use for such a garden.

And some services are in place for autistic residents who can take advantage of supported-living centres and a day centre. 

Now, I don't want this post to look like I am knocking the charity's efforts as what they are doing is amazing and is significant in recognising the cognitive style and challenges faced by those with autism. 

However, I take issue with this "first town in NI" who is now autism-friendly. I don't believe any place can be truly friendly. Every autistic person has a unique combination of sensory concerns and other issues. There will be some who have acute difficulties and others who appear or are generally okay majority of the time.

I argue that the label is a dangerous self-congratulatory one that could inadvertently lead to the thinking that all we need to do is to have a garden, a few day centres and a couple of employment advisers and we have made everything in the town great for all autistic people.#

Lets be real: some difficulties can never be removed. The sound of birds, wind blowing on my face, cold temperatures and supermarkets that are visually busy because of all their stock on display. There are  triggers and problems that for some autistic people can never be eradicated. We cannot ghost town a town centre on a Friday afternoon to suit one person. We cannot remove stock in a Tesco for one person. There are so many accommodations that cannot be made as they are not reasonable. 
So whilst it is brilliant that there are people striving to make a town better for autistic residents and visitors, lets not get carried away and overstate the positive impact of their initiatives. I for one would never find any use for a sensory garden, a day centre or supported-living centres.

Do you know what would help me?! Easy to navigate road systems because complicated roads with lots of sudden bends and one-way streets unsettle me and particularly if car parking is difficult to find.
Solution? Probably me to suck it up rather than rebuild Newcastle in Co. Down. 
Although I have never been to that town, I appreciate that some changes can never be made. 
And that is okay because I am reasonable and I understand that in the attempt to accommodate my needs, we need to be aware of others too and that includes those who are not autistic as well.

So lets not be silly and describe a town as 'autism-friendly' because its nonsensical however noble the goal and great the achievements that are made. Just remember to always include autistic people in this project (to be fair, I haven't ascertained if this has been). 

Autistic and facing redundancy

I was going through a bit of a difficult situation earlier in the year: I was facing the threat of redundancy. Fortunately, I was redeployed into an alternative role which so far seems to be going well. However, there was a time of great anxiety and uncertainty.

Of course, there is always the concern about having a lack of money but that's not something I want to address as its pretty much universal to most people in some form. I am thinking about redundancy for those who are autistic.

I work for a large organisation and I would like to think that they generally do try to play fair but are sometimes faced with tough choices. I don't think they are the kind of employers who deliberately and callously screw people over. No one is perfect and some business decisions can be cutthroat but it is not the place that's in and out of employment tribunals.
The redundancies are not about willfully hurting anyone but based on business. I realise it can feel personal but a decent and legally-sound employer should approach redundancy as removing posts, not people, whilst keeping a sense of humanity too.

Sometimes making people redundant is a good thing, at least for the organisation to stay financially stable. Of course, it isn't for the employees involved sometimes if they have no other employment to go to but it can be financially and/or structurally necessary for the organisation. I am objective enough to appreciate that cuts have to be made sometimes when times are difficult and rationalisation of the staff are needed to protect the future of an organisation. No employer, public sector or otherwise, can operate indefinitely with financial difficulties.

But for autistic people, redundancy can be particularly harsh and I will address why I think this is so. A favourite statistic of mine comes from The National Autistic Society (NAS) where they ascertained that in the UK 16% of autistic adults are in full-time paid employment and 32% in some kind of paid work (NAS, 2016).

We can take from that statistic that autistic people are underrepresented in the workplace. There's still a lot to be fixed to get those percentages up so when an autistic person gets that dream job and is happy, motivated and doing well, its a crushing blow to find oneself on the receiving end of a redundancy notice. It's not just about losing one's source of income but losing so much more. 

Whilst I was thinking about my financial side, I was concerned about losing my routine and my social circle. It was a seriously big worry that if I had no job, I would essentially lose my purpose in life. 
I find that an often asked question in small-talk is, "what do you do?". It feels like my whole self-worth is connected with how I fill my week. And it's got to be something of use when I answer that question. It's no good saying that I lay in bed to lunchtime and then watch a bit of telly. 
No job? One answers by referring to the last job.
Now retired? What did you used to do?
A mother bringing up children? What did you do before kids?
It never ceases to amaze me how much value is placed on one's economic contribution to the economy in trivial conversation. 

Without my job, my identity fades and so does my schedule. I have my little system and all my days are mapped out with what I am doing and it is all nicely timetabled. I feel secure and comforted by my daily structures. Take it away and I have to start all again and make new routines. That amount of adjustment is hard. Real hard. 

But it's more than routines as I also lose my social connections. People always say, "keep in touch" when someone leaves a place of work. It rarely lasts. It is never the same and being the one now outside of the organisation, people can drift apart. I find making friends through work beneficial because it gives a structure in which to form the friendships. Employment gives us a reason to converse. 
I think too that some social connections only exist in a vacuum. Move it from the office and into the pub and it doesn't function so well. Conversations that were once centred on moaning about Terry from Accounts or that damn printer that keeps jamming no longer have any meaning and ceases to be relevant. We would have to find ourselves that 'out of the workplace' identity to rely upon or hark back to the 'good old days'. It's all very challenging and I don't particularly have the energy, more so if my chums are still employed. It begins to feel a little bit too raw as the gap between us widens.

When I have been out of work, I have found the lack of external forces to get me going to be a huge problem. Why bother to get out of bed? Why not just sleep and let the horrors of unemployment wash over me? The stress of being thrown on the scrap heap makes my tolerance to sensory overload very poor and the last thing I am fit for is being dynamic and engaging in a job interview. Everything irritates me and I want to hide up so that I don't become so self-destructive and yet the hiding up is self-destructive too as I am not trying to get myself out of a rut. My enthusiasm for job hunting diminishes as time goes on. It can become quite the damaging cycle.

Some years ago I went through long-term unemployment. It did my mental health no good at all. As time ticked on, I was losing my motivation and just giving up, embracing my fate of being nothing because I couldn't handle change and I made my own safety in the comfort of my bed. I had no structure, no drive and no purpose and it wasn't a good place. I was scared about my situation but scared too, to change it. I was worried that I would end up in a job with unpleasant colleagues with work that was either too hard or incredibly unfulfilling. I was scared by so much upheaval and I picked up negative habits of not getting dressed until lunchtime. It went on a while and I wasn't getting far with finding the right job. Whilst I managed getting plenty of interviews, the rejection hit me hard. 

One day I decided to make a bold move during one moment of courage. I applied for teacher training. I am not suggesting becoming a teacher is the answer to all autistic people's unemployment problems but it helped me get my routine back. I had a purpose again and my beloved structure. I felt that the longer one is unemployed, the harder everything is to get back into work and this isn't something that's purely a problem for autistic people. However, if you know that would be the case, I suggest have plans made ahead. Think contingency plan. So before one gets to that point where all hope is lost, find that something that puts some routine back because that's what starts to add purpose to the day. It helps push the darkness away. Structure made it easier for me to cope with the changes in my life that I couldn't control.

So I figured I would think of some things one can do to create a routine:
  • Do a college course (yes, I know some aren't free).
  • Volunteer somewhere.
  • Join a club.
  • Go see a friend/family member regularly to have things to do on set days.
  • Do the food shopping early in the morning so there's a need to get up. Go buy some food cheap and cook something amazing.
It doesn't necessarily have to be anything that costs. It's the getting out of bed at a good time and fitting in an activity that could form part of the new routine that's important. Going for a walk may be enough. 

There are so many other things that we can do but we have to be proactive to establish that new structure for our days before that depression hits. Get that routine back by creating a new one. Find a purpose to get up and job hunting will become easier. This was it helps guard against self-pity makes job hunting all the more futile. 

I know it's scary. I've faced redundancy a number of times but each one terrifies me a little less because I have in my mind a backup plan. In my case, it's education as my fallback for purpose, structure and stability, although I appreciate that everyone has differing financial limitations. Here, my tolerances to life are better and I am less likely to give up on meaningful job searching as my week is filled with positivity. 

Well, this is what I am telling myself if another redundancy happens. I realise it's not going to solve every problem by keeping myself occurred, such as by making inexpensive soups or tending to the garden. It's about finding that little stable thing to cling onto when so much has been taken away. It's about finding strategies to right yourself when there's no one else to assist. 

We know that this isn't the solution to all our problems. I realise too that this doesn't make the actual workplaces kinder places for autistic people but it is about establishing small areas of control in one's life. Raise the tolerance to all that sensory overload and heartache and use it as a breather to be more effective in light job hunting.  should, I hope, shorten the time out of employment. 

I know job hunting can be a particularly difficult thing to face as an autistic person, that's not even addressing the minefield of interview techniques. It's not only about being chosen as the right candidate for a job but for the job hunter to feel comfortable in that work environment and culture. It's why when an autistic person loses their job, it can be in many cases a tragic situation because they might well take longer to find an organisation in which they really fit. Of course, there are exceptions. 

No wonder autistic people are underrepresented in the workplace but I believe that some of us are able to mitigate some lose of routine. If you can do that, I urge you to; it may shorten that period of unemployment. 

Sunday 21 May 2017

Symbolising disability for autistic people

I've seen various comments on Twitter, website articles and even petitions against the use of the wheelchair as a symbol of disability. This is the symbol:

Symbol of disability

I get their logic. 
There's been attempts to make the symbol more progressive and reflect that disabled people are capable mobile people:


But not everyone who is disabled requires the continuous use of a wheelchair or indeed at all.

In the UK, disability is defined as someone who has substantial and long-term physical or mental impairments that impact normal day to day activities. Certainly that doesn't mean that anyone who meets this definition found in the UK Equality Act 2010 requires a wheelchair.

I'm autistic and my cognitive profile certainly has no impact on my mobility.

So the argument goes that the wheelchair logo is outdated because many disabilities are invisible and the logo does not capture this. This can be a problem for disabled people who are perceived to not require certain facilities such as a disabled toilet because they do not appear to be disabled from a casual uninformed glance. Both logos fosters the view that to be disabled one requires the need of a wheelchair. I would suggest that the media drive in some parts to create suspicions in the public of those people claiming to be disabled hasn't helped.

It seems like one cannot use a disabled car parking space without someone checking to see if the user is either using a wheelchair or crawling on hands and knees as if a limb is unusable. Any hint of fitness or good health casts concerns that the person is abusing the benefit system to avoid work. Whilst there are cheats in the system, the attitude that one's disabilities must be obvious to require certain facilities is narrow-minded and outdated. Disabled people can have a difficult enough time without being scrutinised by ignorant factions of the general public. Such unwanted aggression can put many off from even leaving the house. 

I don't personally require the use of disabled parking spaces or disabled toilets but I do understand that it is mortifying to be judged by people when one uses disabled facilities if the disability is not visible. There are stories of abusive notes being left on people's cars, which is a huge knock to one's self confidence, which is often already low. The change of logo would symbolise a inclusive acknowledgement of all disabilities.

I can appreciate that the use of such adaptive facilities are not always about mobility. A carer might not physically fit into a standard toilet cubicle to administer the care a person needs. The disabled toilet gives that additional space. An autistic person may be easily spooked by a shopping experience and their carer needs to shepherd them into the shop quickly. Close proximity to the shop might limit the possibility of the disabled person running off. There's so many different reasons that go beyond simply walking.

However I can see too that some autistic people who take things literally might have a strong aversion to using a disabled toilet as they may not feel the toilet is aimed at them. I can see that for those that require the facility but do not recognise their entitlement to it because if their interpretation of the logo may be challenging for the carer. But there will be autistic people who don't need carers but find going out overwhelming. All that chatter in a ladies toilet, coupled with bright lights, queuing, toilets flushing and hand driers can be intolerable. A disabled toilet limits that level of stimulation. Yet for high functioning autistic people, I know for me, I don't see myself as disabled to the degree where I want to use disabled toilets. Sometimes I am happy with the general ones, particularly when they are quiet. It hinges on my tolerance levels.

But I have issue with those who want to change the disability logo.

Whilst I think a better logo would be a great idea, the key is to what?
The point is that everyone knows the current symbol regardless of where we are in the world. If we start to create a new more inclusive one, that level of recognition will be gone and it is going to take a long time to get that up to the success of the current symbol. I also struggle with what could replace it that would not only be inclusive of all disabilities, be international in the sense of no words included and not be so abstract that it becomes meaningless.

If anyone has a suggestion of a better symbol, I am all eyes. I will happily take a look but I think the problem is not the symbol but the understanding in which as a society we fix to it. Our world is full of symbols. When I save a document in Microsoft Word, I am clicking on a picture of a floppy disk but I have no floppy disk in my computer. I don't believe that I am limited to saving to only that 1.44MB medium. What we need is education to teach people that disability is more about a person who is in a wheelchair and static, relying on others to move them about. I wouldn't like to jump too heavily into the alternative wheelchair symbol discussion because I am not a user of a wheelchair but from my viewpoint, the new symbol made me think of someone who is into wheelchair racing. I am not sure that is a helpful either because obviously there are many users of wheelchairs who aren't going to be into that sport or indeed capable of it.

I believe rather than getting too heavily fixated on the symbol itself because designing a better symbol is incredibly problematic, we need to be focusing on widening the definition of disabilities so that disability isn't synonymous with needing a wheelchair. To do so, that starts with education.