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 24 April 2015

Communication Confidence


Communication difficulties is possibly the most well known struggle that those on the autism spectrum face.

The aim of communication is to exchange information and ideas with others. It is an essential skill to have in life, whether we are simply communicating that we are say hungry or tired or engaging in more complex communications of a business negotiation or scientific research paper it is clear that communication skills are really quite important to all of us.

So what is it that makes communication hard for us aspies?

The trouble with communication is the way we are dealing with multiple streams of information at once and my brain struggles to interpret this.

Just think about the word ‘yes.’ It’s meaning is clear isn’t it? Well not quite. If it is said with a nod of the head it could mean that it’s a positive response. If the tone of voice raises at the end it could be a question (yes?). If you’ve just approached someone and they say ‘yes’ they are really saying ‘what do you want?’…..

The list goes on and it’s clear that even simple words change meaning depending on the context and tone they are spoken in. The same is true for text. If I SUDDENLY WRITE IN CAPITOLS you might think I’m being angry and shouting, or perhaps I’m just highlighting an important sentence for you to remember.

Most people simultaneously take in and understand these multiple messages and unspoken clues with little effort and can then respond the most appropriate way. For us aspies it’s often not the case and instead we need to consciously learn to read and understand the messages being given. In a way it is just like learning a foreign language. This is an analogy that has helped me greatly when I’ve found myself frustrated by communication difficulties. As a handy twist of fate, a fairly common aspie trait is a strong ability to learn and absorb information so learning to communicate fluently with the ‘native neurotypicals’ can be both fun and achievable, so long have patience and persistence. So where do we start?

I’ve listed a few pointers that have helped me along the way and I hope they help you too. At the end of this post I will use some example situations to get you started but intend to go deeper in further posts.

These are tips have worked for me in the past, but we all learn in different ways so please have fun adapting this to suit you and please feel free to add any tips you have found helpful to the comments section.

1: Who do you want to communicate with?

In the above examples I showed how communication varies greatly depending on the situation.

Before even starting to work out how and what to communicate we need to think about who you want to communicate with. Perhaps you want to be better at communicating with friends, or colleagues at work, or emails, or phone calls, the choice is yours.

2: Identify the Challenges

Now you have decided which style of communication you want to improve I’m going to ask you to do something important, but uncomfortable.

Make a list (either on paper on in your head) of what you find difficult about this. Be as critical and brutal as you like.

It feels very un-natural to be critical and negative when trying to learn something but actually I find this a helpful exercise. Usually we are encouraged to ‘think positively’ but actually for this process we need to be able to separate what we can already do and what we struggle with.

So perhaps you’re now sat looking at a list and feeling a bit defeated. Actually what you are looking at is a list of things we are going to learn how to conquer. We have identified our enemy and it’s time fight these challenges.

3: Set some Goals

Looking at our list of challenges we might start to feel overwhelmed, where do you even start?

What we want to do here is start to break down these issues even further and form a set of goals that are manageable.

Perhaps we have said that we find making friends hard because you don’t understand people. It would be a huge task to tell ourselves that we are going to suddenly have friends overnight, but perhaps we can break this down into smaller chunks. What do you need to learn here? Perhaps learning to better understand body language might help? Or learning some conversation starters? Building some self confidence to meet people? – these can all be made into smaller, more manageable goals. Instead of setting myself a challenge of being perfect at communicating with friends, I could say ‘this month I will try and learn how to start a conversation’ – this is achievable and a step towards my final goal.

What skills do you think might help you to achieve your goal and what skills do others seem to ‘just have’?

4: Learn – Study & Research

Now we know what it is we want to know how to do, how so we gain the skills to be able to do it? It’s time to get our academic heads on here and start to study.

What we are doing here is asking all the questions you were probably afraid to ask, but there’s no silly questions here and we have a great tool at our hands to help us along…. The internet.

The internet allows us access to vast amounts of information and it’s time to tap into this. What we are looking for is information and advice on the topic we are looking for. It is helpful for me to ask the question ‘how do you ...... ?’ as if I am looking to see what exactly it is the other person, this gives me clues as to what I can start to practice.


            Perhaps you want to learn how to improve eye contact – ask the internet ‘how do you      improve eye contact?’
           
            Perhaps you want to know how to invite a new friend over - ask the internet ‘how do        you invite a new friend over?’

            Perhaps you want to improve your writing skills - ask the internet ‘how do you     improve your writing skills?’

Can you see the theme developing here?

As we search we will come up against lots of information, so how do we know what is relevant? For this we have to give ourselves a filter. Do I find what I’m reading helpful? If yes, then I can consider it and move on – if not, scrap it and move on.

Having trusted people (perhaps a care worker, family member, support group or friend) to chat through ideas with is a great help too.

Some useful websites I’ve found are http://www.helpguide.org/, http://psychcentral.com/ and http://www.wikihow.com, but you can also have a look for ideas on YouTube and Google. Always remember though that you will simply be reading other peoples ideas, so if you do not agree with what you read or you try something out and it doesn’t work for you then simply leave it. If in doubt ask a trusted person for their advice.

5: PRACTICE! - Step out of your comfort zone

So by now we are brimming with knowledge about your new skill. Perhaps you now know the correct way to use newly learned phrase or can recite the rules on small talk etiquette, but you still come across as robotic or fake. This is because we need real practice with real people. This takes courage and persistence but is what moves us from knowing how to communicate to actually communicating naturally and comfortably.

Look for as many chances to practice what you learned in step 4 as possible – and don’t be afraid to get it wrong!

I’ve often found that I get great practice by going and staying at a youth hostel or joining a tour, even if it’s in my local city. A day spent with tourists has two advantages – As I’m around people from different areas a lot of my differences are immediately seen as being because I’m assumed to be from elsewhere and I start with a clean slate. I am also able to make as many embarrassing mistakes as I like fairly consequence free – I’ll never see them again!

The tricky part is that there is still some embarrassment and it’s still often a long and frustrating process but one that opens your horizons and has real results. The adventures you take add to the experiences you can then chat about in future. Volunteering in a charity shop gave me practice in speaking to the public AND a good story to share at a job interview. A weekend in a youth hostel in San Francisco put in the deep end learning to socialise in a Night Club, Coffee Shops and taught me to make small talk AND provided great storied to share with people when I get back.

Just by focusing on a small element of the overall issue we identified in part 1 we are building our confidence and having an adventure along the way.

6: Enjoy yourself

As you start to build your confidence then it is great to look back to what you want to try and improve next. We never stop learning and developing our skills and as you conquer your fears you can have a great time learning the skills you want to be able to communicate well.


I hope you have enjoyed this post and found it of help. I really look forward to hearing about the adventures you have as you learn new ways to communicate. Please feel free to share this post and leave comments.

I will be covering this topic in far more detail in future blogs so please feel free to let me know of any tips you would like to share or any topics you would like to read more about.


Friday 10 April 2015

Diagnosis Dilemmas - Q&A on autism diagnosis

Diagnosis is a topic that pretty much everyone on the spectrum has at some stage been affected by. Perhaps you were diagnosed as a child or as an adult, perhaps you have no formal diagnosis and feel it is something that you don't need or you want a diagnosis but really don't know what to expect from it.

This week I wanted to have a look at the topic of diagnoses in the form of a question and answer session.

Before I get started I just want to note that here in the UK the services offered vary wildly depending on where you live, my answers are based on my experiences alone. I'd love to hear your story, especially if you live in a different area or country. Feel free to add your views to the comments section.

How old were you when you were diagnosed with asperger's?

I've actually been diagnosed officially twice, so I've got two answers to this. The first diagnosis was when I was 16, or to be precise on my 16th Birthday. I was leaving full time school and it was clear to me that there was something going on for me that really needed addressing. I had terrible problems during my teenage years and the wishy-washy explanations I'd been given just didn't make sense to me. Finding myself on the brink of starting my adult life in such a vulnerable position spurred us into getting me a conclusive diagnosis. 12 years later I received a second diagnosis that matched the first. I had hit some difficulties at work and my line manager was refusing to accept that I was on the spectrum. She had dismissed the first diagnosis claiming that autism is a childhood thing (suggesting that I had grown out of it if it was even there to start with) and that I clearly didn't have it (she truly believed that those on the spectrum can't talk). Getting the re-diagnosis not only helped secure some adjustments to the working environment for me but also helped me re-confirm things for myself.

Why did you not get diagnosed as a child?

Diagnosis in childhood becoming far more common these days, but back in the early 80s when I arrived into this world it was fairly rare. In the years since far more research and knowledge is available allowing for much earlier diagnosis. For me the signs were missed and it was all the more autistic traits I displayed as a child were put down to things such as bad parenting / premature birth / bad behaviour / food additives etc, as I got older this moved onto almost random guesses at 'your son might have..... ADHD? / bereavement issues / ADD? etc' but at no point was any diagnosis offered. When an actual diagnosis was brought up it was generally considered that it shouldn't be offered as I might use it as a label to hide behind.

What did the diagnosis involve?

A series of tests are carried out ranging from a full IQ test to manual dexterity and problem solving tasks. There was an extensive series of questions relating to how I feel about various scenarios and a fairly long and invasive questionnaire relating to my behaviours and development as a child. The questions can feel quite intrusive and intimidating so I recommend taking time over the questions and asking someone close to help you out if you find you're struggling with them.

Following this diagnosis more in-depth testing and therapies often get offered. I've had follow up tests to manage the sensory processing aspect of autism, sensory integration therapy and various therapies to address meltdown management and social skills.

The National Autistic Society has a very comprensive guide on how to request and what to expect from an adult diagnosis for those in the UK at this link: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx

I've not included any links to information about diagnoses in other countries or for children as I don't want to give you bad information as I don't know those areas very well myself - I welcome you to add any information you have that may be of use to others in the comments for others to see.

How did you feel about the diagnosis?

When I first received the diagnosis I was a bit shell-shocked. I remember having a typical teenage strop and telling my parents that it was a really crap 16th birthday present! I was given a list of things that I wouldn't be able to do because of the condition and really nothing positive was presented to me. Once the shock had passed it turned to relief. For a long time I had known there was something different about the way I was experiencing the world but having a reason why meant I could stop blaming myself and start to live my life, and I wanted to prove those who said I would never achieve anything wrong, I had mission!

What benefits has the diagnosis provided you?

There are two main benefits I have found from having an official diagnosis.

The first is a personal one. Having a piece of paper in my hand that conclusively proves that the struggles I've had are real and not just a weakness of character really helps me to overcome the pain of times things are bad. The diagnosis also provides me with a really useful tool to use to seek help, understanding why and how I'm struggling really gives me the key to figuring out what the solutions are.

The second benefit I have found is a purely practical one. By having a diagnosis I am officially classed in the UK as having a disability which automatically provides certain levels protection and support. It also opens up doors to getting specialist services, home support, treatments, advocacy etc, that are only offered to those with a diagnosis.

What disadvantages has the diagnosis given you?

None. I'm not saying this jokingly either, there really haven't been any disadvantages as such. The only negatives I could scrape from the barrel are that the process of actually getting one is frustrating and lengthy. Since getting the diagnosis it's only ever been beneficial for me.

The concern posed to me before my diagnosis was that it could be a label I could use to hide behind. In my experience it seems to actually work in reverse and having the label gives me more power and control over the struggles. To be fair if I was going to hide behind a label then I'm sure I would have found something to hide behind anyway and the effort in fighting for diagnosis would have been too much of an effort!

I've also heard often the concern that having a diagnose might disadvantage you if someone is prejudiced against those on the spectrum. In reality if you encounter small minded people like this then having the diagnosis legally protects you, actually in this situation not having the diagnosis would be the disadvantage. If I ever feel self-conscious or wary about disclosing my diagnosis then it's perfectly OK just to keep quiet and not tell anyone, having a diagnosis doesn't mean that I have to declare myself as an aspie to everyone I meet (although having a blog kinda does that for me!).

I suspect I am on the spectrum, would you suggest I get a diagnosis?

For me having a diagnosis has been a very positive thing but that doesn't mean I will be insisting everybody rushes to their doctors tomorrow for a test. There has been clear advantages for me in getting support as I often struggle but the process of diagnosis is frustrating and intrusive. I'd recommend assessing yourself if you feel a diagnosis is right for your own personal situation. I attend a support group in my local area that attracts many people both with diagnosis, self diagnosed and those just finding about the condition for themselves or someone they know. If you have questions about diagnosis groups like this and online support groups are a great way to chat things through with people who have gone through the process themselves. It's good to get a variety of views on the subject to help you make your own decisions.



I hope you've found this weeks topic interesting. As always I welcome your feedback and views. Please feel free to send me in your comments and questions below.