Brave: coughing it up

Dearest readers, 

After having a busy week with the monthly classes I have for my masters (the department I'm run their classes in a more compact manner so that students who work can organise planned leave etc) I thought I would share some good news. In November I am attending, along with three other students and a member of staff from the department, International Study Week at Uni Siegen in Germany. (Siegen is sort of near Cologne for those who are a bit lost with German geography, the other side of Germany to Berlin). I've never been to Siegen but have been to many other places in Nordrhein-Westfalen and am excited to return to Germany after 18 months away. Anyway I digress, the International Study Week is regarding inclusion and barriers regarding disability, active support and challenging behaviour. I am really looking forward to hearing about this on an international level and maybe even contribute (if I'm brave enough) as female adult with a diagnosis of Asperger's Syndrome. I feel that this kind of conference will be very enriching for me but also I may also be able to have to opportunity to network and exchange opinions with the potential to gain and give.

In addition there has been the new channel of awareness and petition started by NAS regarding employment. This is actually quite a meaty topic in terms of discussing it (where do I start.. haha). Given that there have been other recounts of experiences in work I thought I'd give my two pennies worth... because that's what I do best! I leave companies nameless because I am not out to begrudge. If anything I won't even refer to any particular experience really in direct detail as it is the general experience and reflection of potential difficulties in employment I am focusing on. It is due to my past experiences I now know what does work for me and what environments are better for me; be it type of job, sector of work or the demands of the environment. 

One thing that is super important for employers to know is how much courage it can take to 'disclose'. In fact, this will what I mainly focus on this week. The question of disclosure is an interesting one anyway as some people are all for it and are very honest and open whereas others are more cautious of the reaction of others or the potential after effects. I think it is fair to say that do not assume one or the other for any one individual. They may not 'tell' due to unsure how others may react, unsure of how to put the words together, nervous of judgement after among friends, family or colleagues. They could just be a private person! I certainly don't usually tell people until they get to know me,  as the opening gambit I normally get is: 'I know someone with autism'... yes I know they standing in front of you? I used to find people would either pity over you and go soppy (as in oh poor you, we must make everything OK for you and wrap you in cotton wool) or it would be brushed over, causing frustration when I did have difficulties that I couldn't just pick up and 'get on with it'. I also used to find it was quite bipolar in reaction too - it would usually be one extreme or the other. 

Disclosing such a thing may interrupt how you once saw someone - it is a shock hearing that someone you know, maybe like and love as a friend or family member isn't quite who you thought they were. The anxiety felt by the person disclosing can bubble up inside and maybe even boil over - I mean how does one even broach this subject? It is quite sensitive to be honest. It's not really the kind of thing you can just shove on the end of a rant (which I have...) But for the individual who thinks they may need a referral for this 'communication impairment' (and I use that word with a pinch of salt, it merely gets my point across) and wishes to tell a parent or wishes to disclose to an employer or even to new friends... I feel it can be a bit rich. 

I guess the one thing I can say to anyone who does hear this news is: whoever tells you this - they are the same person they were five minutes ago, yesterday, last month intrinsically. Of course we humans do change over time and develop and grow, but we are always us. And it's that 'us-ness' that does not change. If we open up, this has often taken much time and deliberation, and many anxious nights too for some! Sharing this knowledge is personal, it's not quite like telling someone what sandwich you had yesterday so it's quite important. It may take trust to open up, it may take desperation. Different people will have different reasons but the best way to react is to listen in the first instance. 

How do we open up and tell people? It could be something as small as dropping something on the end of a sentence, strategically leaving books or articles around, discussing someone else famous or a friend who bares similarity or even started through the simple I have something to tell you. The communication can be verbal or written like a letter, or mixture of the two. But the main thing is it is something that works for you. When I have important meetings, supervisions and doctor's appointments I always take written notes along with me... or I forget why I am there and will say,  'yeah everything's fine' rather than opening up or getting my questions or queries out in the open. Sometimes I may even write down what I want to say and just hand it over as a letter and then discuss from there. I know this is a different situation but similar skills may be transferrable or provide a light bulb moment for someone, you never know. 

So I guess the main thing I want to say this week is how powerful the skill of listening is if an employee tells you something delicate like this and to throw your assumptions to the side. That employee is unique, like every human and we all have differing skills. Your employee, or their family if you meet them, will know what works best for them, either through trial and error or previous experience. In a world where we are all so driven by money it is easy to get people to all do the same thing in a like it or lump it manner. But that is not right. Please never throw anyone to the sidelines due to a diagnosis of autism or due to challenges they may be facing due in part to autistic traits or behaviours. Please work with them and learn from and through them. Every individual with autism is unique, so do not base your knowledge on stereotypes. There are many who have so much to offer the workplace, but are lacking the opportunity or opening. 

Speak soon,



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