What I would like you to know when I tell you ‘I’m autistic’

I realise when I first tell you ‘I’m autistic’, it is difficult for both of us.

• I’m desperately waiting for your response and I’m trying my hardest to watch your body language and interpret your signals, something that is very difficult for me.
• You most likely haven’t a clue what to say, I’ve just made a major comment out of the blue ‘I’m autistic’. My logic, reasoning and observations from going through this many times now, suggest you may be going through the following:
  — Autism, what is it? A mental illness, a disease, a disability?
  — Ouch, there’s a real stigma there, isn’t there? and I want to be supportive.
  — What on earth do I say and how do I react?

Having gone through this numerous times now, how can I help you and what works for me?

Some facts and background

Autism isn’t a mental illness or disease, it is a neuro-biological disability but I prefer diffability, a different way of ‘being able’ and I like the term ‘Neurodiversity’ that describes this very well.

Stigma — yes there is still lots, but times are changing and as with any other kind of ‘diversity’, awareness and understanding is increasing and you can play a positive part in that.

I prefer to say ‘I am autistic’, not ‘I have autism’ because it is a part of me, part of my core identity and always has been, and not something that can be separated from me.

What to say and how to respond…..

Please don’t be embarrassed for me, I’m not! I have a unique brain that causes me some difficulties, but also brings some unique strengths which I’m quite proud of. It is a spiky profile, the challenges should never be underestimated, but neither should the strengths.

Please don’t think that it is socially unacceptable to discuss autism with me. If you don’t know what to say, please tell me, so I can work out that this is about you not me. I’ll then work with you and it will stop me panicking, thinking I have got it wrong somewhere along the way.

You may ask me what it means for me and I may reel off a few of the behavior traits — telling me you do the same doesn’t make me feel ok, it makes me feel as if you don’t believe me or that it is not important enough and I feel invalid and insignificant. Among discussions with my online autistic friends, this might be the one response that we all agree does not work for any of us!

Saying you don’t seem or look autistic also doesn’t help. I’m not sure what you are expecting me to look like or do. It is worth me pointing out that behaviors are simply responses to stimuli, being autistic is an experience, a different way of thinking and feeling and autistic people may respond differently to their unique experiences, therefore different behaviors. A key phrase is often used -

“When you’ve met one person with autism, you’ve met one person with autism”

I understand you most likely want to empathize, so making out I’m not really so different from you, you may think is helping. But the thing is, I’ve spent my whole life feeling different, so please don’t dismiss this, as for me autism is such an important discovery.

Some comments that have really worked…

• “Gosh that’s so interesting, how did you find out?”
• “Wow, and I say once again WOW!” after reading one of my blog posts
• “That is so interesting, that really helps me understand…..”
• “I always knew you were different/odd/geek/nerd/very good at your job etc” — fascinating I know, but these comments highlight my difference and it becomes a starting point for discussion, plus in most instances to me they are compliments!
• “I would never have guessed”….unlike some other comments this is still acknowledging what I’ve just told you
• “How has finding out helped you?” “What have you learned?” – just be prepared for a monologue response!

There is one comment or series of comments I have found particularly difficult

and I want to devote the rest of this article discussing this….

When I tell you I’m autistic and you say “I’m ok with it”, “It’s ok”, “Nothing’s changed”, “So what?”, “And?”, “That’s fine by me” etc

Firstly, let me apologize to my friends and family who may be reading this and who may have responded in this way. I know you were/are trying to reassure me, to tell me I am still accepted for who I am and that nothing will change for you as a result of this revelation.

I really don’t want to be rude, but here’s the thing…..

I’m telling you because I value you, I respect you, I love you and I want to share this personal information with you so we can understand each other better.

I love knowing you will always accept me for who I am — in fact in the early days of revealing autism, it was very important for me to know that this was how you felt, because I was only just understanding what it meant and I was extremely unsure of myself. I know you didn’t realize this, but these comments felt as if you weren’t interested and I felt very insignificant and unimportant as a result.

And today….I’m not looking for validation as a person. I would really like you to be interested and attempt to understand my experience and what makes me tick….

I realize this may come across very self centered, self absorbed, egocentric, all about ‘me’, my own world, Me me me, autistic (ironic laugh… :) !).

But I want to let you into a little secret….

All my life, since as long as I can ever remember, I’ve been observing you, listening to you, copying you, noticing what makes you popular. I’ve been studying you — how do you act that makes you so successful. I’ve been trying to work you out, sometimes obsessively. Those of you who think I’m not interested in you couldn’t be more wrong, I’m so interested in you so I can work you out and know how to make conversation with you.

• Then I might be able to fit in
• Then I might be liked also
• Then I might feel connected
• Then it might be as easy for me as it seems to be so easy for you…

My coaching friends, I’ve listened to you so much, taken so much of what you have said on board, I have thought OMG is that really how people think and feel. I’ve stored these gems of information so I can hopefully use them further down the line.

I have read so many books on human behavior and self help, thinking they would be the answer to me being able to emulate you.

For almost 47 years, I have been studying and copying you. You were my longest term ‘special interest’, one I have never tired or got bored of. Most special interests have come and gone, but you have always remained.

However, no matter how much I studied, I still never quite got it. I almost got away with it, but inevitably, at the most inappropriate times, something slipped and I gave myself away. I showed my vulnerability, miscommunications occurred, I panicked, I had meltdowns, I became embarrassed, I was gullible, I lost some of you as friends through misunderstandings and some of you took advantage of my naivety. In the midst of this I was intense, zoned out and was so singlularly focused in my quests that I could never understand why you didn’t do this also.

I couldn’t work it out, no matter how much I tried, I would sometimes hide away with guilt and shame, I stayed awake at nights trying so hard to figure it all out, I would cry myself to sleep in the early morning hours eventually exhausted, still no further forward. I was always missing something….and I kept it all hidden!

Then something miraculous happened, I stumbled across autism by accident…

I stopped studying you quite so fervently for a time and I began to study autism instead. I compared and contrasted you against this newly acquired autism knowledge and everything it was teaching me. I saw how autism fitted me like a glove, a perfect fit, not simply in terms of behaviors, but in terms of experiences. I read autobiographies of females on the spectrum and read about how they thought and felt, their experiences. I read about how their brains were processing and saw how similar that was to mine. I started to realize how differently that was from your’s, even though you didn’t realize this. I read about all the theories of autism being presented and saw how many put forward by autistic people just made total sense. I read work put forward by some highly regarded people in the field and was able to work out most of what made sense in my world. I connected with other autistic females online and I understood them and their experiences and they understood mine. Finally, it all made sense, all these years of being on the outside looking in.

You may think that during this time I stopped studying you, stopped trying to understand you, to empathize, but I didn’t – I was using my knowledge of autism, my newly acquired knowledge of me to understand just how different you were from me. I realized how important and significant this was and I wanted to share this with you so we could have shared understanding, shared empathy.

I know for the last couple of years I have talked about little else, to any of you who would listen even though you probably didn’t want to, and I didn’t really give you a choice. I realize that my usual single focus attention to you and your needs has not been great as I tried to make sense of autism instead.

I hope you can understand that those 2 years out of 49 has been a necessary activity in order that I can finally understand myself and most importantly accept myself. I hope you can therefore realize why validation was important in my early days of finding out this information, but is much less so now as I have found my place in the world.

I know you are ok with my autism, some of you have been around me for most of my 49 years and a large number for 20 years plus. I guess if you were not able to accept me, you would have been one of the ones that walked away a long time ago because autism has always been a part of my life even though neither of us ever realized it.

I do ask of you to please not dismiss it as not important or no big deal….

I come back to why I told you in the first place, because it is important to me, because I value you, respect you and love you. For those I am in the process of telling now, I’m telling you for the same reasons.

I am hoping that some of you are able to take a small amount of interest to try and understand. If you were able to spend just the tiniest proportion of time that I have spent studying you, I would be so eternally grateful.

Some day in the future, you may know someone experiencing that same disconnected feeling, someone who is struggling to understand themselves, someone who may say ‘I’m autistic’ to you or may have another ‘difference'. I hope this post will give you some insight in how best to respond and support them.

It may even be you….

This post was inspired by an online friend who was struggling to communicate about her autism to colleagues and friends and deal with their comments. Our online group discussed this at length and all of us had similar experiences. In my sister post — “When empathy isn’t quite empathy” I discussed this further and why I thought this occurred. I wanted to share why this was so important for us.

I hope you have enjoyed this article, please feel free to share, please press the ‘heart’ at the end to recommend to other readers so it appears in their feeds and follow me on Twitter or here on Medium — @Autaitchel