Blog Birthday!

A year ago today I shared the link to the first entry on this blog, having put it up the night before but not yet told anyone it existed (I wanted to “sleep on it” before sharing). My facebook memories stated that I was “really really nervous” about it and I certainly remember it feeling like a “big thing” at the time and hoping that people would treat me gently.

I didn’t actually state that I’d discovered I was autistic until the end of the third post. The first one was hastily written and rather patchy, and I wasn’t in a great place mentally at the time. I’d originally intended to wait until I had a formal diagnosis before I “went public” about being autistic, but my first assessment going so badly wrong meant that I had to change plans.

When I first set the blog up the title was simply “Finally Knowing Me” and I didn’t add the subtitle “An Autistic Life” until after I was formally diagnosed and started to become much more confident about the whole thing. I also didn’t know about tags and categories on the blog – just posting at all was a massive deal and I had to get my spouse to sit with me throughout the entire process in order to be able to do it at all.

Initially I didn’t post anything at all without him reading it first. I wasn’t confident enough. I was afraid of getting things wrong. I still am sometimes, and I want to write all sorts of posts about all sorts of things, but I also need time to absorb everything that has happened during the last 16 months – I find it hard to believe now that just 17 months ago I didn’t have the first idea that I was autistic and had very little knowledge of what autism even was. It has been a steep learning curve.

And I’m still learning. Following my diagnosis, just under 10 months ago, I became more confident about joining autistic groups online and interacting with other autistic people. Since then I’ve also been through an ADHD diagnostic process as well. There is a constant stream of new information, of new things, of articles and tweets and facebook posts and blog posts and so on. I have hundreds of links saved, so much still to learn and analyse and think about.

And I still wonder where I might fit into this world of neurodiversity, and what I might eventually contribute and how far autism will continue to be an interest I pursue in that “very interested” kind of way, and so on. For now I’m blogging less than I was, partly because I have needed a break for the sake of my health (I was beginning to become exhausted) and I’ve needed to take a step back, partly because I’ve become aware of so many more issues since I started blogging and I want to start to investigate and research more thoroughly (I need to read, I need to think, I need to learn – then I’ll be in a better position to analyse and write), and partly because I’ve been starting to rebuild my “real world” life a bit (getting back to music and running and seeing a few actual people from time to time).

I feel I have time to do some of those things now, in a way that I didn’t this time last year. I got frantic in October as I saw the number of views here plummet (as they would, since I wasn’t generating new material, and I was engaging less and less online as my health took a nosedive – I’m also a terrible publicist and not very good at publicising this blog beyond sharing each new post to facebook or twitter) but I forced myself to stop fretting. If only two people read each post then so be it, if someone “unlikes” the facebook page each time I post then so be it!

Which takes me back to a year ago. To the point where I decided that I HAD to start explaining what was going on in my life, and that I HAD to be openly autistic. And to the point where I concluded that even if nobody believed me and all my facebook friends unfriended me and dumped me for claiming the identity “autistic” for myself without official permission, then that was the way it would have to be.

That was the point at which I could no longer pretend. I saw it as a two way choice – either live openly and freely as an autistic person (and probably go on incessantly about it for a while), or kill myself. The former risked me ending up getting laughed at or disbelieved or alienated (all of which were potentially reversible), the latter ended up with me being dead (which, of course, is irreversible). And so this blog was started, as it was the best way I could think of of making the information available to people.

As it turned out I wasn’t disbelieved or anything else, rather the opposite. And this blog has since grown into something I’d never have expected a year ago. I wrote 170 posts in the first year of its existence (this is the 171st), which I’d never have imagined when I started out.

Who knows where it goes from here. I know it’s not finished yet. I know there’s more I want to do. I know I need to give my head processing time and that life continues to change. I know there is SO much more to learn, and that some of the issues surrounding autism and being autistic are complicated and that many are controversial. I don’t cope well with conflict, which means that I have to consider how “activist” I can be before it becomes seriously detrimental to my mental health.

I know that lots of people also produce vlogs and that accessing information presented only in speech is exhausting for me because where reading is something that takes very little processing for me, speech takes a great deal and I tend to save my “speech processing spoons” for real life interactions, which is when I need them most. Perhaps as I continue to recover from burnout this will improve.

My own life is also still very chaotic. We live in chaos, in a constant state of mental fragility, on a financial knife edge, everything precarious and uncertain and unstable. I’d like to use some of my energy to try to improve that a little if I can. The burnout of 2016 meant my life almost completely fell apart – I’m still picking up the pieces and trying to stick them back together in some sort of sensible order. It all takes time and energy.

My spouse assures me that it will all be sorted eventually (he’s an optimistic type), and also reminds me that as far as autism and autism advocacy and so on is concerned, it’s still really early days for me. I look at the work of others and feel very far behind, but then I realise they’re often months or years further along their own journeys and I’m still really new to all this.

To those of you still reading, and particularly those who’ve been reading from the beginning, huge thanks. Sending virtual first birthday cake to you all!

Limitations

Advice often seems
To tell me
To consider
“The positives”
And to focus on
What I
CAN
Do.

If I’m honest
This strategy
Isn’t always
Terribly helpful.

I’m perfectly well aware
Of my strengths
And achievements.
They’ve been pointed out to me
Many times
Over the years
(Because people seem to like
This sort of
“Feel good”
Stuff,
I think).

I don’t need this information
Again and again.
I already have it.

What I am finding
MUCH
MORE
HELPFUL

MUCH
MORE
HELPFUL

(Twice,
And capitals,
For emphasis)

Is to learn
What my
LIMITATIONS
Are.

I have been told
All my life
About working hard
And succeeding.

But the things
That I
CAN’T do
Have rarely been
Considered

Or have been ignored
Or have been thought
To be the result
Of me being lazy
Or wilful.

So,

I have continued
To blame myself
For my failures.

I have struggled
To learn strategies
To compensate
For my difficulties

I have never learnt
How to ask
Other people
To help me.

(Because I have always been told
To focus on my abilities
And strengths
And how strong
I am).

If I’m honest (again)
Then allowing myself
To admit
What I CAN’T do
Is a sweet blessed relief.

To learn that I am disabled
Means that I’m not bad and lazy.
It’s Not. My. Fault.

To focus on my struggles
Means I can start
To work out
How to cope.

To drop the “strong” act
Means that I have permission
To ask for help.

(And it’s even OK
To admit
That there are things
I will give up
Even TRYING to do
Because they use
Too much energy
For me).

It is relief.
Really really big
Relief.

After 4 decades
Of trying
To live up
To the high expectations
That so many people
Have had.

Can I stop now?
Please?

Can I give up the quest
To be impressive,
High-achieving,
Sparkling,
Witty,
Attractive?

And just be me.

Not impressive.
Not special.

Just me.

And allow myself
To consider not my strengths
(Because I’ve done that
For too long
Because that’s what people
Have told me to do)
But the things I cannot do
The things I need support to do
The things I find difficult
And the problems I have.

Because I need to do that.
I need to learn
I need to discover
What I CAN’T do,
What I’ve been faking
All these years,
And where I have been
Pretending
To be capable
And where that pretending
Has damaged me.

I need this time.
I need this space.
I need to be allowed
To be weak
And to learn
How that is
For the first time in my life.

Because that is new to me

It was never part of my mask

Or my plan

Or any plan anybody else
Had for me.

I was never taught
How to give up
Or to let go
Or to rest
Or to relax

Or to accept
That there are things
I cannot do

And that it’s OK
To stop trying
To be strong.

I believe
That only
Once I have examined
My weaknesses,
Accepted them,
And worked out
What to do about them,

Will I know
What my true strengths
Really are.