Welcome to Steve’s Aspie Adventures



Whether you are reading this as a parent, carer, friend or are on the spectrum yourself, a warm welcome to the blog and I’d welcome your comments. I was diagnosed with an autism spectrum condition as a teenager. Throughout my life this has brought unique challenges, deep lows but also very happy times. I hope with this blog I can share some of my experiences, challenges and successes with you. My hope is that it can help along the way at breaking down some of the fears, misconceptions, stereotypes that come hand in hand with Autism by giving an insight into what it’s like as an individual living with the condition.

At times when I’m affected most by my condition life can grind to a halt, but that has given me a drive to experience all I can when I’m feeling well. Travel brings a new perspective on life and the experiences it brings have made my good days even better and given hope in my bad days. For me it’s a metaphorical middle finger to a life-long condition. In my other blog (Roaming Steve) I share some stories of my travel and adventures.

I hope you enjoy reading this blog. Feel free to share this with your friends if you've found it helpful. I'd love to hear your thoughts, any topics you'd like to read about and own experiences so please comment or message me.


Please note, that in all my blog entries I can only relay my personal experiences and perspective. It is important to remember that every single person on the spectrum is an individual with a different story to mine. I have no medical expertise or training and am writing to share my personal experiences only.


Friday 22 August 2014

I Know There's People Worse off Than Me

Today’s school meal was grisly mince slop served with dry potatoes with the texture of shoe insoles. I’d lost my appetite and gingerly prodded at this mess until it had been concealed beneath the remnants of the potato.

‘Starving children in Africa would be thankful for that lunch!’ exclaimed the dinner lady.

I pondered this comment. Did the school really send my leftovers to Somalia? How did they get it there? Would it not be cold and inedible by the time it arrived?

The problem was that I simply didn’t understand the sarcasm and the real meaning behind her statement. Instead of understanding that she was telling me to eat the food and be grateful that I actually had food, I could only summarise that this food was actually sent there and therefore I should always leave a portion for them at every meal.

Not quite the affect this dinner lady had in mind but a common attitude encountered.

The sentiment behind the message here is simple; My dislike of the food is far less important when in the perspective of someone who had no food and would be thankful for the vile slop I was turning my privileged nose up at.

Clearly there are times when it’s helpful to step back and see things in perspective, but other times it’s down right dangerous. It’s not the times we have a small gripe about the quality of the food here, It’s when there is something else, something more serious going on.

The recent tragic death of Robin Williams should highlight an important lesson for us all. Mental Illness can affect anyone, regardless of circumstance. On the surface it would be easy to ask what Robin Williams had to be depressed about. Was he living with abject poverty, war, starvation, severe disability…..? No he didn’t, but that’s not the point. Depression and feeling depressed are two entirely different things. Depression is an illness and should be treated as such. I can’t possibly speak into the circumstances that spiralled so tragically for Robin Williams but I can share my experience of depression.

I have at times struggled with severe depression. It comes and goes, but is something that I know I am likely to face again in the future. The struggles of living with autism create a particularly challenging set of circumstances for me that can act as a trigger and this comes hand in hand with periods of both depression and anxiety. I will be covering both of these subjects in more detail in later posts. Both anxiety and depression are treatable and manageable but need proper support. There is a vast difference between feeling a bit depressed and having chronic depression, the same can be said for anxiety.

At times like this it would help to see the bigger picture right? This is an attitude that is so very common and one that stirs anger in me and makes me seethe. But why? What could possibly be wrong with a reality check on our own place in the world and a reminder that in fact our problems aren’t as bad as they could be?

Let’s start by looking at the inconsistencies of the perspective.

By picking this apart there are a number of glaring holes in the argument. The first one we come across is how inconsistent it is. To my logical brain using a linear perspective like this removes an ability to express any personal feeling at all. So there is someone worse off than me? What if I was that person, there’s still someone worse off than me! At what point can I just get some support without being compared.

It also has to work both ways.

If I cannot be sad because someone has more to be sad about then logically I also cannot be happy because someone else has more to be happy about than me.

It makes support conditional.

One of the frustrations about mental illness is that it doesn’t make sense. If I’ve got depressed then there isn’t a logical list of reasons why. It’s simply that I’m depressed. Withholding support because I haven’t ticked enough boxes to justify to you why I’m unwell is downright dangerous.

Let’s look at this as if it was a physical issue,

I tell you I have a headache. You refuse to give me a pain killer as someone 5000miles away has a brain tumour.

This sounds ridiculous, but is it any different to the time I had an anxiety attack and took medication to calm myself and was told, ‘you’ll feel much better if you remember that you live in Britain, think about the poor people in Iraq, they’ve really got something to have anxiety about!’

Comparing unrelated issues

So I can’t have anxiety because I don’t live in Iraq? This to me was as obscure as saying You can’t have anxiety because there are no goats on the moon. It’s just unfathomably unrelated in my little mind.

It also had an underlying message.

‘Your illness is selfish’ I heard. I care deeply about injustices in the world and would love to help in any way I can, but this isn’t linked to my day to day life. Back in the school canteen I could only rationalise that the school would be sending the leftovers to the starving children. After all, why else would they tell me about them. What difference does my lunch choice have on a starving child. Indeed what difference does my anxiety have on a troubled Iraqi?

Now I’m older and able to tell that this doesn’t have anything to do with these suffering people in far off lands, we can get back to the issue I was complaining about….

Withholding support

I’ve always been taught to tell someone if I have a problem. Depression is very difficult to talk about, especially if you are going through it. So complaining that I don’t like my school lunch is trivial but what about alerting someone to a growing depression? How do you tell someone effectively that you are struggling? Who do you tell?

The times I’ve had the response given to me that my problems are insignificant in comparison just make things worse. It gives the clear message that my very real issues are of no importance. At an already vulnerable place this extra kick isn’t helpful. Is that the message you are wanting to convey?

A Better Response

For me I benefit being allowed to vent on occasion. Often simply having a good moan can help me to put things into perspective myself. Just be there for me, allow me to talk and offer advice if you can. What to you might seem like a silly or minor issue may be a major concern for me. Allow me to process this myself – it is not your place to judge this for me.

Mental health concerns are a serious issue and if you or someone you know may be struggling please contact and talk to someone in a position to help. Don’t put it off and don’t be afraid to talk about your concerns.

If you need to talk or have concerns about someone you know then here are some phone numbers for you:

UK: Samaritans 08457 90 90 90

Republic of Ireland: 1850 60 90 90

USA & Canada: National Suicide Prevention Lifeline 1-800-273-TALK (8255)

Australia: Lifelink Samaritans: 03 63 31 3355

For a larger list of countries visit http://www.suicide.org/international-suicide-hotlines.html 

Friday 8 August 2014

Helping Work to Work For You - 10 Reasonable Adjustments

10 Reasonable Adjustments – Helping Work to Work For You

Employment can often feel like a daunting mountain to scale and sometimes the barriers presented to an autistic person can make the world of work seem unachievable. So often just a small and simple adjustment can help no end and help you flourish.

In last week’s blog I shared my own personal story of employment. This week I wanted to share some of the adjustments that have helped me along the way. It is important to remember that in this post I am sharing my own personal experiences and what has worked for me might not necessarily work for you, but I do hope that it can give you some ideas to think about. I work in an office environment so these adjustments reflect that, but many could be used in other settings equally as well.

So what is a ‘reasonable adjustment’? I asked this question to the Occupational Health Assessor I had been sent to see.

She explained that it is an agreed (formally or informally) set of changes that can be implemented by your employers to help you achieve your best in your job. They can be flexible to help you through a difficult patch or put in place as a long term option. Each workplace will have different requirements so it’s best to be able to discuss with your management or careers advisor on what can be offered.

But what’s ‘Reasonable’ and ‘Unreasonable’?

My advisor suggested that enlisting a circus to cheer me up would be unreasonable, but a clown assigned to my office might be reasonable.

I understand what she was trying to convey with this answer, but having a clown would freak me out and not be of any use. I’m also not sure which of my colleagues would be best suited to this task….

So on to some ideas that have been more realistic….



1: Flexible Hours

Flexible working hours has been one the most useful tools available to me in assisting my employment. In essence it works by allowing me the flexibility to choose my hours of work rather than having a fixed and rigid shift pattern. This obviously has boundaries (a window of time to start and end the day in, communicate with my management my projected working times, complete my contracted hours over a set period etc) but even small amounts of flexibility are game changers.

In a previous job that didn’t allow for flexible hours I encountered a situation classic of how my condition can effect things. The drive into work was stressful and a number of delays meant that I arrived at the office 3 minutes late. I was already feeling overloaded by the disrupted commute but the reprimand for being late resulted in a meltdown so severe I was signed off sick by the doctor. The result – stress and loss of money for me and a loss of an employee for a week for the company – a lot for the sake of a 3 minute delay!

With flexible working this situation wouldn’t have even caused a ripple – I would have allowed an extra few minutes to calm down and made up the lost time later in the week. A win for both myself and the company.

2: Home Working

Another option that has helped me in the past is the ability to work from home. For me an occasional day working from laptop or doing an online course can help me still be productive on the days when I’m not well enough to drive or have awkwardly timed medical appointments. In my job it is limited what I can do from home, but perhaps in yours this would be a great option to explore?

3: Time Outs

This is another adaptation that has been the difference between a productive day and complete fail for me. The ability to get up and take a break. This obviously has to be kept within constraints – Clearly I should tell someone that I need a break first and taking a 10 minute break every 10 minutes would be ridiculous so it must be kept reasonable.

The practical application of this is times I feel I’m getting overloaded or approaching meltdown. Taking myself away for a few minutes to have a glass of water, walk around the building or simply sit in a quiet room allows me to be able to calm things down and make a rational decision how to proceed. I use this flexibility to take regular breaks between tasks to focus on the next task to be completed and helps balance my day.

4: Increased Sickness Trigger Points

One of the implications of living with a disability is that I unfortunately have more than my fair share of days off sick. As well as the direct autism related issues (meltdowns, tiredness, overload, depression, anxiety etc) that can render a day unmanageable there is also another factor, lower immunity. All of the negative effects that autism can bring as well as many of the medication can make me more susceptible to usual mild health concerns.

Most employers have a set trigger point relating to sickness absence and exceeding the number of sick days allowed can trigger disciplinary action. As it is recognised I potentially will exceed this I have an increased trigger point.

5: Time Allowances for Medical Appointments

A frustration of being in full time employment is the absence virtually any support during the evenings. I sometimes need to leave work early in order to attend hospital appointments, care appointments or therapy. Even the support groups happen during daytime hours, the nearest to me that meets in the evenings is 50 miles away. My employers have allowed the flexibility to attend these appointments. Hopefully as services improve there will be more options for evening support. For now the messages from the support providers are ‘we’ll help you become employable’ and their actions say ‘We won’t provide help accessible to the employed.’ This remains an ongoing frustration.

6: Mentorship

Mentorship is something that I have tended to source myself informally, although there are options to arrange this more formally. Mentorship provides a point of contact who can guide and advise on issues relating to employment. I’ve got a good working relationship with a number of colleagues and line management and use this as mentorship. If I don’t understand something or want advice on how to respond or deal with a situation then this is where I go for advice. When changing jobs I have used the union for mentorship on approaching employers and making applications. Whether you do this formally, informally or both, this is something that can be immensely helpful.

7: Advocacy

Very often I come across as being a very confident and articulate when I speak so it can come as a surprise that I often require an advocate. An advocate is someone who I have allowed to speak on my behalf. At times, especially when recovering from a meltdown or sensory overload, I need someone to act on my behalf in making arrangements and decisions. For me it tends to fall on my assigned support worker or my parents. It does embarrass me no end having to delegate this, but having established this with my employers removes the immediate embarrassment of having to explain why as an adult I got my dad to phone in sick for me. In a previous position I was required to only speak for myself (I think this is legally questionable) but luckily since I’ve been able to name individuals who can speak on my behalf should I need them to.

8: Communication Filtering

This is a long way of saying, ‘give me that info in a different way.’ Some people are visual, some prefer words, some like emails, some like the phone……

Too much information in different formats confuses me and causes an overload. I’m visual and need things written down. To some degree I can adjust this myself. I always have a notepad with me and write down instructions and if I can I will ask the person to email me the details of the task. This rarely causes anyone to even raise an eyebrow. In a past job a system was put in place where all jobs coming my way were filtered via my line manager who’d re-write them into a format I understood. At the time this was a huge help but in my current job isn’t needed. This is a good example of how adaptations can vary over time.

The telephone is a particular one to note. I find using the telephone particularly difficult for both communication and sensory reasons. In previous jobs I’ve been able to put in place adaptations ranging from screening calls using an answer phone to being taken off the phones altogether. In my current post this isn’t suitable and the phone is central to a lot of my work. I’ve had to find ways around these difficulties and it currently doesn’t cause too many problems (on the surface at least!). This shows how sometimes full adjustments just aren’t suitable and you have to make efforts to manage the difficulty in other ways. I have scripted out texts to remind me what to say on the phone and plan calls before making them as I know this helps me.

9: Office Plan Review

Something often overlooked, but very important, is the layout of the office. Slight changes to my desk or even location in the office can create huge benefits. As I am visual and have difficulty processing sound I find it better to face in towards my colleagues and the door. This way I can see if someone wants to talk to me and helps me become part of the team. If the office becomes a bit noisy I have the option to move to a quieter desk for a short while to help me concentrate on my tasks. Perhaps there are adjustments like this that may benefit you?

10: Involvement of External Agencies

Numerous organisations and charities offer various means of supporting you in work. This may be by coaching you, speaking with your managers or advising of more formalised changes. It is always worth looking around and seeing if there are any services near you who can assist you in being successful in your job.

I hope in this post I have shown that sometimes very small adjustments can have a very positive impact for both you and your employers. I’d be very interested to hear your comments on what adaptations have been successful for you in your line of work or what you feel might help you in finding a job. I will be covering this topic in future posts and if you have found this of interest then please feel free to share.



Next time on Steve's Aspie Adventures:

My next post will be in two weeks time where I will look at the subject of putting our difficulties into perspective and asking this question:

  • Does recognising that others may be in a worse situation than you act as a helpful or unhelpful viewpoint?
Let me know what you think... 








Sunday 3 August 2014

You’ll Never Find A Job!

This is my story on the challenges and obstacles I overcame and still face in finding and keeping employment.

‘You’ll never be able to hold down a full time job’ was the message I received loud and clear as a teenager leaving the education system with no qualifications and a bleak future ahead. In the fifteen years since then the message has become less negative and each year that passes services and support for finding employment increases, but this still remains one of the biggest and most challenging issues facing those with autism.

I'm one of the 15%(1) in the UK with autism who holds down full time employment. I've got this employment issue solved then, everything is fine and great. My life is sorted? Think again!

My employment seems to attract a huge amount of interest and confusion amongst friends and professionals alike.

'How did you do it?' I get asked from unemployed friends. 'You're living the dream, money, car, house. What's the magic formula?' There isn't. I don't have one. 'You are clearly MUCH more higher functioning than my son' (Yes I was told this! Can someone really make this judgement based on my employment?) It all paints a picture for me that suggests that employment is the golden ticket that makes everything OK and that by being employed I'm therefore doing well.

The reality? Employment takes a lot of hard work, determination, good luck, support from others and perseverance. There is no easy route. Virtually all forms of official support cease once you are employed, despite being in a situation of requiring more support. Nearly all support groups, clubs, hospital appointments take place during the working day. The closest support group to me that operates in the evenings is over 50 miles away. Working takes so much effort that at times it can render me very unwell. Sacrifices worth making for the money and the independence? That's for each of us to decide.

This is a huge topic and one I will be breaking down into many posts in the future. It's hard knowing where to start, so I guess I'll start with telling you my story.

Education

I left school with no qualifications at all. I was a grade A student and my teachers had high prospects for me. Unfortunately as many aspies will relate to, my intellectual ability and my ability to cope with the world around me are vastly different. I left school disillusioned and hopeless. After receiving my diagnosis at 16 I was given the reality check that 'You should not expect to ever hold down work.' I'm strong willed and set to prove them wrong. I enrolled in an apprenticeship in a new town and by 18 had enough qualifications to get me into work.

First Jobs

At 18 I was no longer a child and ALL my support stopped. Autism support was and still is very much aimed at children. I was simply diagnosed too late and at 18 you transfer to the adult services which were far from useful. I decided to just get a job, any job.

I walked into Tesco (A major supermarket) and very quickly landed a job as assistant in the bakery. It was hot, noisy and as the junior; I was being given constant and often contradictory instructions. It lasted 2 weeks. The final straw was a  customer handing me a sliced loaf of bread and asking for it to be sliced. When I replied calmly that it already was she told me, 'You're not paid to speak back to me.' I put the loaf through the machine sideways, collected the mangled mess, handed it to her and walked out.

A week later I tried again in a calmer job. A microfiche scanner post. I got the tedious job of sitting in a room with 100 others scanning endless legal documents to microfiche in a hot and dark room for 8 hours a day. It was so tedious I fell asleep on the button and captured 200 photos of my head for a surprised client. This job lasted a week.

Finding a career

Clearly I needed something else, and I got my lucky break not long after. At the time my Dad worked on a military base and they were looking for a stores assistant. He dragged me in front of the manager with a script to ask for an application. I did as I was told and found myself at interview.

The job was fairly mind numbing, I literally spent my day stacking socks on a shelf. What made this different was the people I worked with. The military can be very blunt and to the point, and this is how I work best. My supervisor left after 3 months and I'd proved my worth enough to be asked to stand in.

Now I was a fully fledged and permanent member of staff I used this foothold to propel my career forwards and towards a job that suited me better. The civil service is huge. As one of the biggest employers in the country and covering a vast array of jobs it literally provided me the opportunity to choose my own path as and when I felt ready.

Over the years that followed I rode on my successes and jumped at opportunities when I could to bounce up the grades and try different jobs. After the stores I transferred to a local Medical Centre as a receptionist, then to a personnel team, I passed a management board and took a post as a Communications Officer in charge of corporate events and publicity.

This sounds like a smooth ride but it was a constant balance of finding and using supportive management to help me ride through the tough times. Unfortunately one of these tough times had catastrophic consequences.

Coming back down to earth with a bang.

This leads us to a point three years ago. I had a (relatively) well paid job, a mortgage, a girlfriend, holidays abroad, a nice car. Everything was perfect and I'd become complacent. So had everyone else.

I'd been able to put the right support in place over the years and I had started to flourish but as I became more and more independent, the support dropped away. As I pointed out earlier, support groups tend to only operate during working hours, so they weren't available and had become reliant on friends and family for back up. I can manage meltdowns myself but when a few happen at once it can turn into what I term a crisis; the point I need to call in external help. This time round the support from line management, parents, the church and friends didn't work.

Over a short period of time changes at work had added to stress and I had an unsympathetic manager, I'd been arguing with family and split with my girlfriend. 5 of my closest friends (whom I relied on largely for support) left town and I took a bad turn. My usual support network had disintegrated and I was faced with a huge hurdle. My attempts to get help failed, the church didn't understand what my issue was and the professionals required me to go through a referral process that took about 6 weeks. I spiralled downhill as I fast lost control of everything I'd spent all these years building up for myself. The resultant mess nearly lost me everything including my life. Most of friends fled to the hills and without income (signed off work long-term and benefits don't cover even the basics) I lost the house and ended up returning to my parents' home to avoid homelessness. The depression at times was so severe I felt suicidal and hopeless. In a total of nearly two years off work my office had begun relocating to a new town and I was faced with almost certain redundancy with no options left for my return.

Rebuilding

Just over a year ago I had finally recovered enough to start rebuilding. I was fairly certain my immediate future would involve unemployment and I was coming to terms with that. I didn't want to go without a fight and made one last attempt at restoring my career.

I decided that taking hefty pay cut as I saw downgrading a better option than being unemployed. If this strategy was to work then I needed to make sure I was going to a job I could manage and with colleagues I could work with. Still being in a crisis meant that it would be too risky to just get anything at this stage as I didn't want to risk a complete relapse. I arranged visits to meet and talk to prospective managers about the jobs on offer and about my situation. This was one of the hardest things I've had to do. Approaching a stranger who I would like to employ me and being open about my situation. I felt humbled, embarrassed and nervous.

It paid off. I now work in an office doing a variety of varied duties with the best team I could hope for. It's not easy and I'm not there yet. I'm still recovering and fighting personal demons but the support I get from work at the moment is so important to me and I've got hope back that I can achieve my potential again in the future.

What next?

I don't know and all I can do right now is concentrate on what's immediately in front of me.

My journey through employment has been a rollercoaster and I hope this post has been interesting to you. It was very hard to write and something I was very nervous to put into print. I would like in next week's post to continue the topic of employment and look at things that have helped me and what support work have provided that have been of great use to me.

As always, please feel free to share this post and send me any comments or feedback. I really value your input.

Thank you for reading.







1) http://www.autism.org.uk/about-autism/myths-facts-and-statistics/some-facts-and-statistics.aspx