A Bitter Pill to Swallow: Asperger’s Syndrome – The Update

Asperger’s

Note: May contain triggering content

I wrote a post about being diagnosed with Asperger’s Syndrome. Even though almost all of it still applies and is still very true, I wanted to write an update post on how things have been, what I’ve learnt and how I’ve felt since then.

It’s been quite a while since I spoke about this in depth and there’s a lot that I’ve learnt along the way. In fact, I’m learning more and more every day. There’s so much I’ve learned over the past couple of years. It’s opened my eyes to the fact that autistic women are disempowered, bullied, degraded, treated with condescension by society. It’s set me off fighting a lifelong battle for equality.

Feelings, thoughts and circumstances change over time. It hasn’t just opened my eyes on an individual level, but on a cultural and societal level, especially with the current global political landscape – exposing just how much social injustice, inequality and societal dysfunction there is in the world. It makes me think of what kind of world I’ve grown up in. Life is only just beginning to make sense for me. It’s also made me realise how little I’m regarded by the rest of society.

Several drafts and edits later, here it is. I want to be honest – these words aren’t meant to be sugar-coated.

Also, I’m not writing this for sympathy nor pity. I want it to be eye-opening and informative, and open the door to a realistic perspective, improve understanding, educate and build acceptance for others on the spectrum and ultimately end disability-shaming.

The traditional forms of media don’t always discuss it very accurately. So hopefully I can inform and inspire on here and gain a sense of comfort in other peoples’ experiences.

Besides, I thought that this is the best way for me to discuss my feelings, etc. – on my own terms and in my own words, rather than just being constantly judged and misunderstood.

This whole journey for me has been really traumatising for me. I’ve often found myself wrestling with suicidal thoughts daily. I’ve had nightmares, flashbacks and ‘relived’ all the negative things happened, before and after I had my diagnosis and acquired the awareness and knowledge that I never had before. No matter how hard I try to move on, turn over a new leaf, rebuild my life, the past keeps coming back to haunt me.

I mean I can’t help but think about what could have been if I’d gotten the right help and support sooner. If I went to a school that could’ve accommodated me better and not misunderstood me so much, it would’ve been much easier.

It might not have gotten to that point where I’d decide to end it all that one night. The night I decided I didn’t want to be alive anymore and decided something had to be done about it.

Being the ‘quiet girl’, somewhat of a nerdy girl, struggling to make friends, my general weirdness and awkwardness and being introverted led me to being ridiculed and isolated. Years of bullying, struggling to fit in, feeling lost, feeling like didn’t belong and ostracism eventually led to a suicide attempt at 17 years old. I remember the times when I would’ve given anything not to be alive anymore.

All the problems I had that could have been alleviated and I can’t help but imagine how much of a better life I could have had. That is a bitter pill to swallow.

Being diagnosed late in life and not knowing has had lots of repercussions on my life. For starters, my mental health really suffered. I have been suffering from PTSD from all the humiliation and bullying experiences I had – I do get restless, irritable, keep re-experiencing it, and get easily startled. I get lots of flashbacks and upsetting dreams. There have been times that I’d go to bed and hope to not wake up the next day. There have been times where I’ve felt like a completely broken woman. Now, what I’ve realised is how much I failed to make any worthwhile connections. I’m paying for that now.

I just wish I knew then what I know now…

On one hand, it’s a huge relief. I’m glad there are answers and explanations. But it’s only just the beginning. There wasn’t as much autism awareness back then as there is now.

On the other, it has created an avalanche of emotions. I have so many mixed feelings about it. It has been very embittering, especially with the social stigma and taboo attached to autism – the fact that to many non-autistic people, you’re a liability.

But a lot of women develop mental illnesses, particularly depression and anxiety, because their autism/Asperger’s Syndrome wasn’t recognised and missed out on the relevant support. And I’m one of them. I’ve been constantly made to feel like a burden on the rest of society.

It was like I had been pulled back and forced to relive those exact painful emotions, feelings and thought of all those times. ‘Oh, we have a label now’ ‘We know what the problem is’. But I know for a fact it’ll take years to fully come to terms with it. It seems everything in my life up to this point has been a lie.

I tried way too hard to fit in. School was such a vicious and intimidating place for me. It was a snake pit, full of poisonous snakes. Having to endure the toxicity of a high school environment every day gave my self-esteem and confidence a serious beat down. I remember those times I came home from school in floods of tears because I had nothing in common with anyone and was picked on for liking things they didn’t like.

Looking back, I never ever did fit in. All I did most of the time was mimic and copy social behaviours to try to pass of as normal.

The other day I looked at some old photos of myself from around 15 years ago. I can’t help but think about how oxymoronic they are – smiling on the outside but going through the most agonising, emotional pain on the inside. I remember where I was at those points in my life – feeling so much confusion, emptiness, sadness and loss. A girl who just didn’t know her place in the world…

Being at school, a place where I constantly felt inferior, ugly and disgusting, a place which made me hate myself as well as me being hated by most people, I adopted this mentality of that I had to be a certain way and do certain things for people to like me. I would just silently take the blows.

It was that mentality that persisted that slowly destroyed me as a person. I constantly felt unworthy.

Every day, walking up the steps to the school gates made me shudder. Ever since then, I’ve continued to struggle with lots of mental health issues, particularly body dysmorphia. If it wasn’t my lips, it was my hair. If it wasn’t my hair, it was my eyelids. They’d pull the scrunchie out my hair, and say, “How come your hair sticks up like that? How come it doesn’t go down like everyone else’s?”

Imagine you’re playing a video game on the highest difficulty, where you get into a combat section trying to be unseen and you’re being relentlessly targeted by a barrage of enemies. But they ignore the non-playable companions. No matter how much you try to avoid them, they always end up absolutely destroying you or at least doing considerable damage. That’s exactly how it was in lessons. They’d constantly pick on me and ignore the people I hung out with.

All throughout school and sixth form, I basically had no social skills whatsoever. I just couldn’t understand the intricacies of social interaction.

That was something that often got me into so many hairy situations at school. Whilst a lot of the teachers accepted me as the ‘quiet one’, others were just very apathetic or just plain cruel.

I’m thinking back to all those lessons, being picked at random with a question, forced to speak in front of the rest of the group, not knowing what to say and being silent then having to deal with all the sneers and sniggers. And with a lot of the teachers often showing favouritism to the “high achievers”, it didn’t help either. Those just made me feel one hundred million times worse about myself.

I remember feeling so insecure and inadequate whilst I was at university. It got to a point where I just didn’t want to be there anymore and desperately wanted to quit. But the problem with that was I had no backup plan or job to go to, so the only way forward was to just stick it out. I remember graduating and how overwhelmed I was with feelings of emptiness and loss and having no real direction in my life.

I felt like the whole world was crumbling from under my feet, my life completely falling apart and I was falling into a deep, dark abyss. It almost feels like the three-year stint at university never happened. It was the most disenchanting, disillusioning experience of my life. It meant nothing. It was like it was all for nothing. It made me feel I had no sense of purpose, that I had no reason to be alive.

Every night, I just wanted to go to bed, never having to wake up the next day and not have to worry about being Laura ever again. I desperately wanted to die.

I wasn’t comfortable in my own skin at all and can’t help but think about all the time I wasted being something I’m not just to fit in with everyone else around me.

Not being a part of things that were considered normal to everyone else has become the norm for me. If I wanted to do a certain thing, I wouldn’t have anyone to share it with. It was very lonely. I always knew I wasn’t the typical teenage girl – I never really had a serious relationship and generally, relationships just didn’t seem to happen for me.

I’ve never been normal. I was never a “normal” child, I was never a “normal” teenager – I always knew that of all the people I was with, I was different. Deep down, I still have no idea what it’s like to be “normal”.

It’s particularly difficulty when 99% of family members are neurotypical so they have no idea what it’s like to see the world differently. They just respond with ‘Stop being silly!’ or ‘Snap out of it!’. It just makes my blood boil and invalidates my true feelings. They don’t know the struggle in my head.

Making friends and forming relationships is never easy for me. Especially as people look at me like I’m an alien when I say I don’t like a certain thing they do. Most of the time, people just can’t relate. My world doesn’t make sense to them and their world doesn’t make sense to me.

Not to mention the high suicide rates among autistic people. It just breaks my heart to think of the amount of autistic people who are no longer with us and have been lost to suicide, substance abuse and eating disorders. Or have at least contemplated or attempted suicide.

It’s disturbing just to think of the amount of talent that’s been wasted, the amount of autistic people being completely cut off from society and being denied a fulfilling life, the fact that so many autistic people are driven to total despair and self-hatred to the point of contemplating and even, in some cases, dying by suicide. I know people tend to see people with individual differences as nothing more than vermin (Please find a list of Suicide Prevention hotlines here).

Being a female on the autism spectrum makes it a lot harder and, just like many other people on the spectrum, both males and females are vulnerable. The rest of society is always so quick to put us in boxes – some of those boxes being the ones that once you’re in, you’ll never get out of.

And to think there are times when I’ve almost ended up in that box…

Knowing what my life was like growing up, how I felt and all the things that have happened to me throughout my life, I don’t know how I ended up not becoming a drug addict. Or not ending up in an early grave or being sectioned.

People on the autism spectrum, both male and female, adults and children, face judgement, stigmatisation, marginalisation, lack of understanding and misrepresentation daily. All while the powerful neurotypicals acquire more power and privilege and an ego boost whilst the more vulnerable become disenfranchised and demonised with very little regard for mental health and wellbeing.

The reason why I do get so apprehensive and fearful about talking about it is because of the whole scepticism and cynicism about autistic people from non-autistic people. It’s also hard because then they believe I’m nothing more than a walking stereotype.

It still hasn’t gotten to the point where it’s mainstream and normalised and I hope that, with this little platform, I can be a part of facilitating that.

I also hope to prove that just because you’re different, you shouldn’t have to limit yourself. You can be anything you want to be and do anything you want to do.

It’s like, just because I’m different, I have less value as a human being and I’m a no-hoper. It’s down to the mainstream media portrayal and how they continue to bully and demonise the disabled on a daily basis.

Just because you’re on the spectrum, it doesn’t mean you’re unworthy of a life, you’re useless and that you should be wiped out of society.

People with Asperger’s and autism have such a unique, concise way of thinking that is so beneficial to our world’s development. They are truly extraordinary people.

I know that there is so much more to me than just Asperger’s. I have lots of interests, hopes and dreams and aspirations.

The biggest problem isn’t me, or anyone else on the spectrum or anyone with any other disabilities. It is mainly the problem of family members and neurotypical people. They tend to see autistic people as seriously impaired, with several limitations as to what they can and can’t do, and just an embarrassment.

And that’s where the real problem lies – there’s the narrow-mindedness and ignorance of a predominantly neurotypical society. Social conditioning is the real issue. Our society has been indoctrinated into the ideas and beliefs that people with disabilities, individual differences or people who don’t conform to the neurotypical norms and ideas are unworthy. The ideas that have been shaped by our culture, environment, even people around us shape ideas that we deserve to be driven to suicide, suffer, have no rights and be treated as second class citizens. that they are underserving of equal opportunities to able-bodied people. We deserve to be the best versions of ourselves, lead the lives we want to lead. That’s where the change needs to happen.

I don’t see what I have as a problem. I see it as the answer…

Hopefully I can use this platform to fight back against the ableist attitudes in our society. I want to help people out there who are struggling and to really help them be understood, accepted and make them really flourish and be the best they can be.

I always bear in mind that just because I’m different and my life never followed a linear path, it doesn’t make me less of a human being. I have the same rights as any other human being and the same emotional palette as anyone else with or without autism. I feel pain, feel feelings, think things, I have ambitions and I bleed just like everyone else. Even if the media portrayals say otherwise. I’m just as much as a fully functioning human being as anyone out there.

It doesn’t mean I have to limit myself in terms of opportunities. There’s still so much I want to achieve – I have a lot of fire in me. Asperger’s is only a tiny part of me. I’ve done a lot reading around the subject about other people’s diagnoses.

Even though I find a lot of their experiences very resonating and relatable, autism manifests itself in different ways for different people on the spectrum.

These guiding principles that I always keep in mind are the main things that hold me together.

I needed to get myself out of the people-pleasing mentality I adopted my whole life. I found myself through playing video games. I’ve vowed never to drink any alcohol again for the rest of my life. I hated the person it made me and 99.9% it just alienated me from other people. Never again will I ever drink to mask my insecurities and create a facade just to be accepted and liked. Never again will I be forcing myself to be who I thought the others wanted or expected me to be. Now I have a much clearer head.

There’s no way I can ever conform to such a backwards, dystopian society that can’t seem to accept or embrace difference; subconsciously believes that I’m better off dead or locked up; has a huge fixation on stereotypes; a society that doesn’t value me as a human being, doesn’t see my feelings as valid and just sees me as vermin. It’s so instilled in our culture that people with disabilities or individual differences should be denied opportunities, made to feel so bad about themselves to the point of substance abuse and contemplating suicide and there’s this presumption of otherness.

One of the biggest problems in our society is that people have been conditioned to think disabled people are inferior, second-class citizens or benefit scroungers – a common narrative created and reinforced by people in power.

Going forward, I don’t want to invest my energy trying to please others before thinking about my own happiness and wellbeing. I’ll always accept that people suspect I’m a peculiar person within minutes or hours of meeting me.

I can only speak on my own personal experiences. Everyone goes through a different journey in life. In general, everyone on this planet has different attributes, interests, ambitions and abilities. This is no different for people on the autistic spectrum.

No one else is walking in my shoes or going through what I’m going through. So, it’s not open to criticism and judgement from anyone.

The best thing that has come from all of this is that I’ve now realised it’s okay to be different. I’m not a normal person. I never will be. And that’s okay. This is only the beginning…

Please find a list of Suicide Prevention hotlines here.

2 Comments

  1. Someone Else
    16th April 2018 / 8:56 PM

    I was diagnosed 8 months ago now and have been coping with severe depression including a period in hospital for the same reasons you set out above. Your account is so very similar to what I have been through, and am still going through. Thank you for sharing, it’s so good to know I am not alone in what I have been through, although I wish you had not had to be. No one should have to go through what we suffered. Much love to you xx

    • Laura
      23rd April 2018 / 7:33 PM

      Hi there! Thanks so much for this message, it means a lot and thanks for sharing your story. I was so nervous about publishing this and I’m now really glad I did because it is so refreshing to hear from people who’ve had similar experiences to me. Much love to you too 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *