My hopes for an autism inclusive future

Autism is a common neurotype. Forget all those misleading stats – the majority go undiagnosed.

I wasn’t diagnosed until my early forties, after struggling for decades. Many families with one diagnosed autistic have many more who unwittingly camouflage and fly under the radar. Yes, autism runs in the family. Don’t assume you’re neurotypical.

Society must learn that we all have different strengths, preferences, challenges, and HUMAN needs (not special needs)…

and END discrimination and bullying!

We must make the world a more inclusive and hospitable place for our neurodivergent children, so they can live and thrive as their authentic selves!

Autistic burnout

#AutismAcceptanceWeek

Autistic burnout:

Before my autism diagnosis, I didn’t understand why I kept getting depressed.

I did notice a link between juggling conflicting priorities e.g. a pressurised project at work at the same time as problems at home (e.g. my eldest was a frequently unwell baby), or two big work projects at the same time.

Every time it was diagnosed as depression and treated like depression: a month off work, SSRIs, counselling, talking therapies and I did a lot of soul searching, theorising (e.g. is it because my first long-term boyfriend eroded my self-esteem, or because I was bullied at school, or because of traumas like my two missed miscarriages), and self-care like long country walks.

Every time I’d bounce back strong, positive, and highly productive. Hyper-productive, even.

After fourteen years of this, I asked my doctor for a referral for bipolar disorder. I felt “crazy”.

Eventually, I was told this couldn’t be bipolar, because that is apparently cyclical, and what I was experiencing had a specific trigger… being stressed beyond my ability to cope, and crashing.

Only after my autism diagnosis, which only happened because it was picked up as the underlying cause of my son’s anxiety when he was fourteen, did I realise this was autistic burnout.

Only then was I was able to identify the triggers, and start self-advocating to avoid it happening again… Successfully!

What a shame the medical profession didn’t pick up on my autism sooner! All the signs were there, even the family history (my brother). I could have been helped so much earlier!

Growing into my weirdness

Weird Pride Day 2022

When I was growing up, I was never average, standard, typical… and that should have been fine.

But I was bothered at school by the cruel taunts of bullies, who mocked me, calling me “square”. I strived to prove them wrong, that I was not a “square”, getting myself into trouble.

By my teens and early twenties, alternative was cool to me. And yet still I strived, too hard, to fit in, to be accepted, losing sight of myself, drifting off course.

In my thirties, it dawned on me that all the people I admire are somehow weird and unique. That normal is over-rated.

“I’d love to stay here and be normal, but it’s just so over-rated”. Yes, song lyrics often spring to my mind, and they must also spill out of my mouth.

After floundering for years, I was finally diagnosed autistic, aged 42, which was life-affirming and validating for me. Finally, there was a solid reason that I was different, a mitigation for the things I struggled with in life that seemed to come more easily to my peers.

I started to think, “So what? I’m different and that’s cool”. Then I started to take pride in those quirks that make me stand out, to take joy wherever I can find it, however weird and uncool it may seem to the standard typical person.

I made the conscious decision to stop being concerned that others might find me weird or “square”. I embraced my weirdness, let my guard down, and started to think about my authentic self, about what makes me tick. I had nothing to hide anymore. This was surprisingly liberating!

So what if it is not cool to be interested in, for example, folk music or bird watching, to spend hours singing harmonies with Simon and Garfunkel or the Beatles, scrapbooking about my favourite band in high school, painting rocks?

If you don’t get it, that just means your mind is just wired differently from mine. But guess what? Every brain is unique, like a fingerprint. We are all wired differently.

Some things about how my brain works are awesome.

Like, I have a vivid memory. For anything. Provided it sparks my interest, then anything – music, lyrics, quotes, images, events, whatever … my mind retains the details.

I could entertain myself for hours just by playing songs in my head. All the parts – the bassline, the drums, everything. Especially the harmonies.

There are many books I read to my kids that I still know off by heart – not just the words, but often the pictures as well. I can hear the words in my head and picture the pages in my mind’s eye, often in detail.

“That very night in Max’s room a forest grew… and grew—and grew until his ceiling hung with vines and the walls became the world all around…”

One thing I love about being autistic is the euphoria I often experience. Things that others may consider unremarkable, or weird, can bring sheer unbridled joy to me.

Running down hills, splashing through muddy puddles, seeing a bird I haven’t seen before, watching newborn lambs in the fields, or spotting deer… these things give me a real buzz.

My mind enjoys certain visuals, like bridges reflected in canals and rivers, or misty fields getting increasingly faint into the distance.

At school, I loved to stand in the middle of a field on a foggy day. A perfect hemisphere of fog around me, a circle of dewy grass beneath my feet. Invisible and untouchable.

My message to young people who get bullied for being weird and different: I urge you to stick around, to grow older, to give yourself time to get more comfortable in your skin, to shake it off, as I have. You are exactly who you were meant to be. You may be weird, but weird is awesome, and “your time will come to shine, all your dreams are on their way”.

And my message to the bullies: Our weirdness doesn’t hurt anybody, so don’t let it bother you. Don’t begrudge us the things that bring us joy. Different is OK. Don’t be such a meanie.

#DifferentIsOK #WeirdPrideDay

My normal face, deal with it

I’m at a gig with my husband (he’s in a bunch of bands). I’m sitting or standing or dancing on my own, but I’m not a pity party, I’m fine.

My evening is getting ruined by a pissed woman (presumably neurotypical) who keeps constantly coming up to me and asking me if I’m ok. She even gave me a hug, for fuck’s sale, despite the signs everywhere reminding people about social distancing.

Yes I’m fine 😬 This is my normal face 🤷‍♀️ Leave me alone 🙄

Don’t do this, people. I do not owe the world a constant forced smile. This is my face, deal with it.

Persons with disabilities… Urgh

On this “International Day of Persons with Disabilities” I’d just like to highlight that this sort of language is unnecessary and stigmatising

Note: As always, this is my personal take on this, I’m not speaking on behalf of my employer.

There is nothing wrong with being disabled.

The vast majority of us disabled people prefer to be called “disabled people”.

If you think you need to say “person with” to reinforce that we are human too, there’s something very wrong.

The plural of “person” is “people”.

The adjective to describe a person who has a disability is “disabled”.

Just say the word. “Disabled”. Say it. “Disabled people”. There, that wasn’t so hard, was it? If you winced, maybe check yourself for ablism.

#disability #disabled #autism #neurodiversity
#diversity #differentisOk #identityfirst

My pronouns, she/they. Why?

Some of you may have noticed that I have started specifying my preferred pronouns on all my social media. In case you were wondering why, here is a quick explanation:

“She/they”, or sometimes “she/her or they/them”, simply means that I do not mind being referred to using the traditional female pronouns or the gender-neutral alternatives.

Although I do identify as “female”, not trans nor non-binary, I am not gender-conforming and never have been. Always the tomboy, my preferred name has always been Charlie rather than the Charlotte that is on my birth certificate. More recently I have started to identify with the terms “auti-gender” and “neuro-gender”, as I acknowledge that my gender experience and gender expression are inextricably entwined with my autistic neurology. I have never been comfortable with gendered terms such as “ladies who lunch”, or “girls’ night out” – preferring inclusive events and mixed gender company.

Due to my preferred name, Charlie, sometimes people who I meet through work make assumptions about my gender (“ooh, I was expecting a bloke” they often say, making assumptions based on my voice or appearance, after previously making assumptions based on my name). Communicating my pronouns can be helpful, as that can spare blushes on both sides.

I always try to be a good ally to all members of the LGBTQIA+ community, including the trans and non-binary community. My trans friends have indicated that normalising the communication of pronouns is the easiest way to help them feel comfortable and included, and this costs nothing.

Anti-bullying week

#AntiBullyingWeek

Sticks and stones may break my bones, but words will never hurt me…

According to bullies over the years, this is me:

Ugly

Four-eyes

Rubber-lips

Square

Dork

Greebo

Loser

Slag

Arrogant

Mental

Deluded…

Unkind words hurt like a thousand cuts. Cuts that might seem superficial, but the wounds can be deep. They may never heal.

The worst trouble I’ve got myself into has been me trying to prove bullies wrong, that I’m not “square”.

Many of the above words were not said by school bullies. They were said to me in adulthood, by people who probably do not see themselves as bullies.

#EndBullying

P. S. I’m way past being bothered about any of this now, at my age, but more concerned that other kids and younger adults will be similarly targeted and affected. And some, like my son, might not survive it.

#DifferentIsOK

Boycott Spectrum 10K

Hey, researchers! Want to research something that could improve autistic lives?

How about researching these correlations:


– Autism and autoimmune diseases (e.g. type 1 diabetes, fibromyalgia)

– Autism and epilepsy


– Autism and connective tissue disorders (e.g. EDS)


– Autism and atopic conditions (e.g. asthma, eczema)

– Autism and Parkinson’s disease


– Autism and gastrointestinal problems (e.g. IBS)

– Autism and long Covid

Leave autistic kids’ DNA alone, and survey autistic adults for the data to prove these correlations.

Make recommendations to the medical profession to proactively diagnose these conditions in autistic people when they are referred e.g. for chronic pain. Help autistic people get the treatment they need sooner for these commonly co-occurring conditions.

Do not try to cure or prevent autism. It is a naturally occurring neurodevelopmental difference that makes us different from typical. Different, not less. Different, not a burden. #boycottspectrum10k

Coming out story

#NationalComingOutDay

I was sixteen when I first concluded that I was bi (thanks, Winona Ryder). I was open about this with my best friend, and my boyfriend at the time, but I was too embarrassed to discuss it with my family or wider social circle.

However, the truth did come out during a sixth form residential trip to the Lake District, over a boozy game of truth or dare. I was a naïve, socially-awkward, bullied, undiagnosed autistic teenager, desperate for validation and acceptance, constantly trying to prove I wasn’t “square” like the bullies called me. Also, finding girls attractive always seemed so normal to me, so I had hoped that among the reactions from other kids would be some nonchalant “so what, me too” or something. Instead, all I got was a barrage of intrusive questions. When it dawned on me that I had over-shared, I got anxious, had a meltdown, fled the scene and eventually phoned my boyfriend in tears (from the playground swings on the chalet site).

In the days following the school trip, the gossip was all around the school. Another friend, from a very religious family, was hostile towards me, because I had gone camping with her the previous year without telling her about my sexuality (I didn’t fancy her anyway).

Things got better at university, in this respect anyway, because I met some like-minded friends through the LGBT society.

That was in the mid-90s. I hope, I believe, that teenagers today are more open-minded and accepting.

Sometimes people don’t come out LGBTQIA+ because they don’t have an accepting environment, not because they are ashamed or not brave enough.

Friends, families, colleagues, teachers, managers and other allies can help provide a safe, supportive environment where it feels OK to come out.

Create your website with WordPress.com
Get started