An Autistic diagnosis – The Autistic Advocate

 

“To be blunt, ultimately, most people don’t give a shit about whether or not you are Autistic.  Like with any invisible disability, if it’s not singing and dancing and parading around the room, they aren’t interested”

 

As an adult, awakening to the potential that you might be Autistic can feel like the dawning of a new part of your life.  You can almost feel everything slotting into place. But the realisation and expectation does not always match the outcome.

Nearly everyone who has been diagnosed as Autistic as an Adult has felt the exhaustion of the aftermath: Having so many questions answered only to have so many more raised, the mental gears grinding trying to process what it means and facing up to the potential of being dismissed by the people you trust and love.

A question asked on Social Media, probably 50 times a day by adults contemplating getting an Autism diagnosis for themselves is: what are the benefits to being diagnosed?

I have a unique perspective on this because of how old I was when I was diagnosed as an adult and the path I have travelled down since that diagnosis. I would always say to go for diagnosis IF YOU CAN.  Why?  Simply because people are even more unlikely to believe you if you are self-identifying or self-diagnosed and often will be too ignorant to recognise the barriers to diagnosis.

There are huge barriers in place.  Some countries (backwards, ridiculous countries) won’t recognise women.  Some countries you have to pay for diagnosis (and it can be expensive), in others the actual act of getting referred for diagnosis can be hit or miss, along with the knowledge of the Diagnostician (usually based on Autistic Myths and a lack of understanding of what Autism actually is).

You can look at the benefits question in two different ways:

What will be the tangible changes to my life if I get a diagnosis?
  • Will there be a queue of support services waiting to make your life easier?
No. There are no support service for adults unless you have a mental health problem too.  There may be a ‘social’ group near to you.
  • Will you be able to get financial support as Autism is classed as a disability?
Probably not. Certainly in the UK as an adult, unless you have serious co-morbids going on, you are unlikely to be able to build a strong enough case to be eligible for PIP.
  • Will people suddenly understand and change their lives in order to help and support you as an Autistic adult?
No, most people do not understand Autism beyond “Well, they don’t like change do they, tough that ain’t it” or “What’s your special skill?”
  • Will your family go “Aha!” and stop blaming you for being you and start to accept how and who you are?
Maybe. It really depends on your family.
  • Will you be given a leaflet and will said leaflet be useless?
Most definitely. Most newly diagnosed adults will get a carrier bag full.  Most will be useless unless you like starting fires or filling recycling bins (If you’re in the UK, the ‘National Autistic Society’ leaflet and the ‘Ambitious about Autism’ ones burn particularly well)
The second way of looking at the question should be:
What tangible changes can I make to my life if I get a diagnosis?
 

This is the most important way of looking at it.

You must be prepared that there is no support for you post diagnosis, unless you have the money to pay for some super duper counselling with an Autism Specialist (Good luck finding one). You will walk out that door clutching those leaflets and you will not have a clue what to do.

To be blunt, ultimately, most people don’t give a shit about whether or not you are Autistic.  Like with any invisible disability, if it’s not singing and dancing and parading around the room, they aren’t interested (If it is singing and dancing and parading around the room, the chances are they’ll be so scared they’ll still ignore you).
If you want things to be different, if you want things to be easier on you, then YOU have to make the changes.  This is not me telling you to get off your arse, I know for some people, for many, the hard truth is that you are not in a position physically or mentally to be able to do this, but, you cannot rely on anyone giving you more thought or thinking about your needs.
So, there will be hard work afterwards if you want things to change.
One of the first questions for most working age adults with a diagnosis is: Should I tell work?
“How do you know that?”I sit in the classroom with the rest of the staff.

I feel vaguely comfortable here among these people.  They’ve been friendly towards me since I started.  I think knowing that I’ve moved 300 miles up country to live here and am the proverbial fish out of water, means that they’ve given me a few allowances, that most people wouldn’t have got working in a busy, fairly large Primary School.  I am allowed to be the shy one.

We’re sat in a semi-circle listening to one of our colleagues and the Mother of an Autistic child deliver a talk on Autism.  Throughout the whole talk I’ve been biting my lip, listening to what seems to me to be a string of stereotypes being thrown out into the room and fighting the urge to either take over or walk out.

I counter this by gazing out of the window for a spell.  This is one of the biggest reasons i love this school.  The grounds are magical. A woodland, a playing field, an orchard.  All brimming with so much wildlife.  I’m watching two red Squirrels playing on the path outside, when, for some reason my hearing zones back into the talk.  Something is said.  Alarm bells flash in my head.  Something has been said and it’s wrong. Completely and utterly wrong.

“How do you know that?”

I hear the words and blink, as I realise that I’m hovering to the left of myself, looking directly at the left side of my face.  I’m helicopter viewing and I’m panicking as I realise that it’s me that has spoken.

Bizarrely this time, I can feel the words rising out of my throat, the breath of air swelling in my chest, preparing to push them out of my mouth – but it’s not my mouth they come from – it’s the other Me.  Sitting there, for once in my life, looking blase and even vaguely confident.  His mouth opens and I watch Him follow up with:

“You’re not Autistic, how do you know that?”

The room is silent.  I can feel what feels like a thousand pairs of eyes fixated on my Other Self.  I hear the teacher ready her reply:

“We’ve been on training courses – that’s how we know.”

I’m shaking my head internally because somehow, for once, I have the correct script for this conversation.  I know exactly where it is going and there is nothing I can do about it.  I can’t stop this other version of Me.

“Training courses don’t tell you what it’s like to be Autistic”

I’m slowly dying now.  All I can do is watch My Own face.  All i can do is silently scream at Myself, asking again and again, why are you doing this to me?  Stop it please!

But, I won’t stop it, I can’t stop it.

“What do you know, Kieran. Have you worked with children with Autism before? You’re not Autistic.”

There it is.

The fait accompli delivered. Exactly what the other Me had been anticipating.

“You’re not Autistic”

The wheels are turning.  Universes are colliding in ways that they have been building up to for eons.

I see the smile appear on My face. I cringe as hard as I can.

“Actually, yes I am”

Then I’m back in myself.  The other Me is once again just me.

The laughter starts.

The Teacher smiles back.

It is not a kind smile.

“Prove it then.”

The next day I photocopy my diagnosis. Blow it up to A3 and pin it on the note-board in the staff room. It’s never mentioned again, but everything changes.

I’m 27 years old.  I have no fixed idea of what Autism really is, or what it means to me.  I am lost inside myself and, for the second time in 3 years, I’ve utterly destroyed my own working environment, simply by telling people I trusted who I really am.

Over the years i have disclosed to three different employers with varying results.  The first two, within Schools, who you’d think would be supportive and helpful, were awful experiences. With the third I was working for a local council.  My direct Line Manager was lovely and supportive, her Line Manager also, was lovely and supportive, sadly the invisible overlords above, combined with the behemoth of bureaucracy of Local Government, didn’t care and tossed me aside at the first opportunity (after screwing me up for a long time of course), I talk about this a little in my article called: How to Hide your Autism.

MY answer to the question would be no, I wouldn’t ever disclose again, but other people’s experiences may differ. I would never tell you not to, but before you do, take care to think carefully about it.  Look at your employer objectively. Is your boss kind?  Do they care? Have you talked on a personal level before?  Are other people given allowances for various reasons? Will they truly support you?  Why are you thinking about telling them?

I would certainly recommend disclosing it to a new employer every time.  It may and probably will hamper your chances of getting a job, despite disability and discrimination laws, but the employer who takes you on despite your disclosure is probably a very open-minded employer, who will be happy to accommodate your needs.  Also, because they’ve known from the start, it allows them to know the real you, the you under the Mask, from the start.  You don’t need to Mask with them.

Masking is also one of the things you need to face.  I talk about Masking in pretty much everything I write, because it’s so fundamental to Autistic people and so damaging. It’s something that every Autistic person does in varying degrees.  Someone diagnosed as an adult has invariably Masked all their lives. You may not even be aware you’re doing it anymore or how much you do it.

You have covered up your Autistic traits in order not to stand out.

You don’t publicly Stim, or you’ve found redirections for your Stims so that they remain hidden out of plain sight.

You may have found a career where you’ve niched and have been able to fit inside a narrow range of behaviours (both social and physical).

You may have observed body language and small talk intensely, so that you can talk your way through social events by using a script you keep in your head.

You’ve got to the age you are by suppressing yourself.

Some people have gotten to the point where they don’t even realise they are doing it, Masking is a habit ingrained in them so much they’ve forgotten it’s not their natural state.  They’ve applied so many layers and layers of otherness to themselves that they’ve lost their true-self and don’t know where to begin to find it.

Masking starts during childhood – it’s where we learn that in order to survive we have to fit in, we do it our whole lives and get better at it as time goes on.  We do it in public, we do it at work, we do it with our families.

Often, once you get that diagnosis, your Mask begins to slip, sometimes even the realisation that you’re Autistic can trigger this.  This can be a huge shock to friends, family and Partners especially.

It can be difficult to accept that the person you love and have spent your life with has hidden parts of themselves from you.

It can be hard to understand why a diagnosis of Autism can suddenly take the person in front of you, whose, what you thought were ‘quirks’, which you have accepted and gotten on with over the years are no longer quirks, but actually uncontrollable behaviours that they really aren’t doing to annoy you.

It can be hard to correlate the shy person you married, with the introvert they have become.

It can be hard to believe that the person you have been with forever has spent the whole time crippled with overwhelming sensory issues, crippled by conversation, exhausted by every social interaction and generally just exhausted by life.

It can be hard for your Partner to take on all of this new knowledge about you and combine it with the fact that they didn’t know it was happening.

This is all something to be prepared for, but it’s important for Partners to note:

Your Autistic person hasn’t deliberately hidden themselves from you and overnight become a different person.  The Masking started when they were very young and has been embedded over the years as a natural response mechanism to the constant attack from the world that they are under.  It doesn’t mean they lied to you, it doesn’t mean they don’t love you.  You are the person they need most at this time, to support and help them through this. The fact that Partners are usually the first people to recognise the slipping Mask is testimony to how much trust in you your Autistic person has, how safe they feel with you.

The reason the Mask often starts to slip is realisation, coupled with the stages of grief that many newly diagnosed adults go through.

Anger is a stage of grief and boy was I was angry for a very long time.

I was angry at my parents as I have talked about in “I look back at my Parents and wonder: How did they miss me?”.

I was angry with the Education system as i mentioned in “An Autistic Education”,

But, looking back, I think I was mostly angry at the world.  A world that had no interest in making life easier for me.

A world that had spent my whole life making me feel shit.

A world that had put me through and under a constant barrage and clearly had no interest in making me feel any better about things or making any attempt to change it’s ways.

Autistic people live in a society that constantly expects us to change for it and, when we do it punishes us. When we try it punishes us and when we fail, it punishes us.  We live in a world that wants us to be something we can’t be, no matter how hard we try (and believe me we try), to be ‘normal’.

This world is not built for us.  Not built for sensory issues.  Not built for our learning styles. Not built for our ways of socialising or want not to socialise.

Because of this, there are very few people that understand Autism, that are not Autistic.  Clinically there is a very narrow range, defined by the DSM 5 diagnostic criteria, of what Autism actually is. But when you talk to Autistic people, you discover that Autism is so much more than what is written in a criteria by people who are not Autistic.  There is so much we do, so much that shapes us.

For me the grief I felt after my Autism diagnosis was less about the trauma of suddenly finding out i was Autistic, the grief was more about the loss of what could have or might have been been.  At that point in my life I didn’t understand Autism remotely in the way I do now. So initially I grieved for the ‘normal’ life I’d never had.

My life dissolved.

Finding out I was Autistic felt like the tangible and realness of the ‘normalcy’ I wanted all my life, had been there all along, just out of reach of my grasp and now I would never touch it.

The initial grief I felt then turned to anger.  Anger towards those who had not seen that there was something ‘wrong’ with me (my language was limited back then).  My parents (My Mother in particular) were the target of much of how I felt.  Not that I ever told them that. I couldn’t, it wasn’t me.  I’d spent my whole life suppressing this thing.  Being the ‘Good Boy’

The Good Boy is the one who keeps to himself, sits quietly in the corner reading, draws as little attention to himself as possible and never causes a fuss.

As a child I was a Selective Mute, which means that, through Anxiety I went through periods where I couldn’t speak. I’d withdraw as much as possible to my bedroom so that i wasn’t drawn into conversations with family members.  I buried myself in books so that i could avoid looking at and engaging with people, because I’d learnt that when people were reading you leave them alone and are quiet around them.

This all played into the Good Boy act.

I have vague recollections of having violent Meltdowns growing up, of hearing my Dad threatening to beat me, of my Mum pleading with him not to.  I can’t for the life of me remember what I could have possibly done that was so bad that I deserved that. Most of it is just a blur though, like much of my childhood.

The Good Boy stuck around though, as a child, through my early Teens, through a suicide attempt at fourteen and then through till the day I decided to leave College.

I’m sitting in my usual seat at the rear of the class, back against the wall. As always in the safest part of the room where i can watch everyone and nobody can watch me.

I can feel a pressure in my body. The lights are too bright, the room too small and stuffy. Every turn of a page, every scratch of a pen is like an explosion in my head.

Somebody drops a book at one point and the noise makes me physically jump.

Some of the people in the room I would have called friends once.  I didn’t know any better.  Friends don’t say the things these kids do.

So at the back of the room i hide, like a monster in the shadows. My text books are laid out in front of me, notebook open, pen in hand, scribbling, even knowing that I don’t need the notes, it’s all in my head already.

It’s 1995 and I’m in Pitsea, in Essex, in England, in the middle of a History A Level class. 

Its 1938 and I’m in my head, in Berlin, Germany and Hitler is enacting Kristallnacht.

As ever, I’m there watching events unfurl: the troops running, windows smashing, shards of glass slipping from their frames as Jewish people cry and scream and cower in upstairs rooms.  I stand in the midst of the chaos, turning, looking, hearing, feeling, sucking in all the super-charged emotion from an event that happened 57 years previously and is now being re-enacted in my head. 

The screams get louder, the sound of smashing shop front windows rises in a cacophony.  Sirens start squealing out into the cold night, getting louder and louder and LOUDER and I’m back in the room.

The fire bell is ringing through my skull.

I’m gripping the table unable to move from the pain in my head.  People in the class turn to look at me as they pack their bags, the words rise up in my throat and I’m outside of my self again – watching myself struggling, willing myself to speak, willing myself to ask for help.  

All i can do is feel the tight knot in my chest and throat as the words stick and build up, but never flow and watch myself gasping silently like a fish.

The bell stops, I’m back inside myself and it’s all gone: The need to be here, the need to learn.  Feelings from four years earlier, that I need to leave, I need to step out of my skin, all come rushing back in. I have to get out of here

It all happened in a second that felt like an eternity.

My classmates turn back to what they were doing. My teacher didn’t even notice. They get ready to leave and join the throng of kids outside the class, laughing, screaming, bubbling with excitement because the fire bell rang and they’ll miss part of this lesson or that.  Their emotions washing over me, and strangling my soul.

I ungrip the table. Gather my belongings and, without a glance or a word, I stagger out of the room. I enter the crowd with my hands over my ears, push my way through and run home.  I don’t take my hands from my ears till i get there.

I don’t ever go back
I’d hugely burnt out for the second time in my life and not a soul knew about it.

I didn’t go back.  I lied (Oh yes, Autistic people CAN lie).  I got up and dressed every morning.  Walked round the block for a bit while my Mum left for work and then went home again and collapsed in a heap – literally. I managed to play that game for 3 months.

Why is this relevant to diagnosis?

Well, the chances are, if you are reading this and are heading for diagnosis or have been diagnosed late, then you’ve been through similar.  Burning out is a common part of Autism.  It’s a result of Masking, whereby the pressures of society and the world get too much.  It can happen in small doses (after social interaction for example) and it can happen as a life crippling derailment.  It is your brain and body’s way of saying enough is enough.

A significant number of adults burn out immediately prior to seeking diagnosis. Burn outs can be dangerous, especially if you are not able to recognise it for what it is.  I’ve spent years, from the age of twelve on various different anti-depressants.  None of them worked.  The reason?  I’ve never been depressed, every spell that led me to a prescription of anti-depressants was burnout.

I had the privilege of being diagnosed at 23, so in Adult terms it was recognised early.  But I couldn’t address it early because i had nowhere to turn with it for over a decade.  There was barely internet in 2004, all the books were about children, there were no Autistic adults around, so I parked the diagnosis.  Literally did nothing.

My awakening to it and the road to Acceptance that followed didn’t really happen until i was in my mid thirties.  It was like being diagnosed all over again.

It was when I started engaging in the online Autistic community that I started to wake up to what was happening.  Don’t get me wrong, I spent years thinking about Autism. There’s a whole other blog waiting for me to write about how much time I spent thinking about Autism and what I was thinking about.  But I could never see how it could apply to myself, until I found support from Autistic people who had accepted themselves.

There is a lot for you to learn: about yourself, about the community, about how there is not a single part of you that is wrong or broken, about how the shit that has happened in your life is NOT your fault.

The biggest step i urge you to take is to read Autistic blogs and talk to Autistic people.
There are lots of fantastic blogs out there written by Autistic people.  People talking about being Autistic, talking about Politics, Science, Education, life, relationships (or people like me who talk about all of them).
I’d be here for days listing them all, there are so many good ones. But, I’m writing a resource collating Autistic voices in many formats, so watch this space and I’ll share that pretty soon.
In terms of talking to Autistics, Twitter and Facebook are really obvious places – I have a wonderful online family thousands strong, who have supported me, encouraged me and picked me up when I’ve fallen.  Out of that I have made a solid core group of friends (Some I’ve met offline, others i hope to meet) who I would throw myself under a bus for.
I would recommend dipping your toe in the water first though.  It can be really overwhelming to see people writing about things that you do, that you’ve never seen anyone else do, or mention they do.  It can be overwhelming to read someone describe the contents of your head.  It can also be really overwhelming to see alot of the terms that are used in the Autistic community and the ideas: The abhorrance of Functioning Levels, the idea that you don’t ‘have’ Autism or carry it around ‘with’ you.  That actually you are Autistic from your head to your toes.
If you’re on Twitter, follow the hashtag: #ActuallyAutistic and you’ll find a whole new world.

On Facebook?  If you check out this blog called ‘Safe places online for Parents of Autistic children to learn about Autism‘, you’ll find there are groups for Adult Autistics too. Mixed groups are often the kindest places to learn from.

Do not be afraid to ask questions.  But make sure you listen.  Your preconceptions of what Autism is and the language around it are exactly that, preconceptions.  The Autistic community will see things differently to you and if you listen carefully, you’ll understand why.

Being diagnosed answers a lot of questions. A shed load.  But it also raises a shed load too, along with a whole ton of different emotions.

It’s something you need to be prepared for.  You can’t predict how you’re going to react but you can plan for it and, in that plan, prepare your loved ones too, because you will need their support and understanding.  Take a few weeks off work after diagnosis, if you’re working and if you can, give yourself time, quiet and space in order to process things a little bit.

Your self care is the most important thing here and recognising when you need it.  If you don’t take care of yourself, then you are not only doing yourself a disservice, but those around you too.

And. Most importantly.  If you don’t recognise when you need to stop, switch off and regroup, you will burn out and it won’t be pretty. There is a reason that the life expectancy of Autistic people is a LOT younger than average. There is a reason that the biggest killers of Autistic people are heart attacks and suicide. You are the only one that can prevent that from happening.

There it is.

I’ve made it sound awful haven’t I…

It really isn’t. It can be the opposite in fact.  But it’s what you choose to do with this knowledge that’s so important.

The day you receive your diagnosis, you are still the same person that you were the day before you received it.  Nothing has changed other than the fact that you can now apply reason to your life experiences and make positive changes moving forward to support yourself.

Being Autistic is amazing.  We have insight into the world that non-Autistic people do not, simply by the way we perceive it.

Be proud of who you are. Learn about yourself, explore yourself.

If you have the ability, shout about yourself so that others can learn from you.

Most importantly: YOU ARE NOT ALONE

So, don’t be alone.

There is a wonderfully supportive family out there.  A family that understands your struggles and how the world around us makes us struggle.  A family that can help you strengthen the bonds with your real-life family too, help them to understand you.

These are the biggest benefits to being diagnosed:  Validation and Acceptance.

Come find us, we’re waiting for you.

Source: An Autistic diagnosis – The Autistic Advocate

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