The Double Rainbow

Intersectional Diversity: The ‘Double Rainbow’ of Autism and LGBTQIA+

For Bi-Visibility Day 2020, here are my answers to questions I was recently asked about my lived experiences of the ‘double rainbow’.

Can you explain what the term ‘double rainbow’ means?

Studies show that autistic people are far more likely identify as a sexuality minority and/or a gender minority, compared with the general population.

Both the autistic community and the LGBTQIA+ community often use rainbow imagery, for example in the gay pride flag and the autism acceptance rainbow infinity symbol.

I came across the term ‘double rainbow’ on the website of the US charity Twainbow who support people who are on the autistic spectrum and the LGBTQIA spectrum.

Here in the UK, we have the charity AIM for the Rainbow.

What is the difference between Autism and Asperger’s syndrome?

Do they both sit under the umbrella of neurodiversity?

Human brains are collectively neurodiverse, not just people with neurological conditions such as autism, ADHD, dyslexia, dyspraxia. We are all wired differently, and neurodiversity is about celebrating and accepting all the different ways of thinking and cognitive processing, even ‘neurotypical’ brains. Diversity, including neurodiversity, is advantageous to us as a species.

An autistic person may be considered ‘neurodivergent’, which means our brains are wired a little differently from the typical brain.

Asperger’s Syndrome is a rather outdated diagnosis given to autistic people who do not have learning disabilities or language development delays. More recently, the diagnostic terms are usually Autistic Spectrum Disorder (ASD) or Autistic Spectrum Condition (ASC).

My diagnostic report says I have ‘Asperger’s Syndrome’, but I usually just call it autism, simply because I do not think I am any more important than autistic people who are non-verbal or who have learning disabilities.

Not all autistic people are gifted or have a ‘super power’. One of my talents is my highly detailed visual and auditory long-term memory, which is both a blessing and a curse. It is tremendously helpful to me in my role as HR systems analyst, and wonderful for remembering dearly departed relatives and reflecting on happy memories, but I have seen and heard traumatic things that I would rather not recall so vividly.

In your opinion, do you think autistic and other neurodivergent people are less concerned with social norms and so are more likely to identify as LGBTQ+?

I have never been one to conform to societal norms to fit in. For example, I deliberately chose to have my first child before getting married. I also wore a pink and purple layered chiffon dress at my first wedding. When I married Si, I wore a dress my cousin’s partner made for me, a knee-length 50s-style dress in shades of silver.

I do think neurodivergent people more often value individuality in preference to fitting in, and we can also be very honest and open.

Personally, I do not believe that non-conformity affects our sexuality or gender identity, because I think we are born this way. However, we may be more likely to be more open about our sexuality and gender identity, compared with the general population, so perhaps more of us ‘come out’ as for example bisexual or gender fluid rather than keeping it to ourselves.

Do you think it is important to state or be open about who you are e.g. neurodiverse and / or non-binary and does this help others to better understand you and your needs?

This is very much a personal choice, and depends on your personal boundaries, comfort, and safety. People are more likely to be open about who they are if we all work together to build a culture where everybody is comfortable to be our authentic selves without fear of discrimination and prejudice.

Is it OK to ask someone to explain what a specific term means if you have never heard it before?

In my view, it is good to ask for definitions of a term you do not fully understand, rather than making assumptions.

It is not okay, however, to ask inappropriate probing personal questions. For example, it is not okay to ask somebody who is trans about what gender affirmation treatments they may or may not have had, or about the contents of their underpants. Asking for preferred pronouns is okay though.

Curiosity is good, but above all we must all respect every individual’s privacy and dignity.

There seems to be a double standard where autistic people are not taken seriously about their decision to identify as LGBTQ+. Is this something you have experienced?

Not personally, but I feel if anybody does not take my sexuality seriously this is more likely to be because they dismiss bisexuality as a phase I went through before I settled down (actually, it has been constant since my teens).

I understand that some trans and gender fluid autistic people are concerned that being open about their autism may lead to people thinking that being transgender is just an autistic thing, which may not be helpful to their cause for acceptance.

There is also the “eternal child” bias, where some people assume autistic people are not capable of knowing our own minds, due to our condition. That is a misconception, and a stigma which needs to be challenged.

It may also hark back to old attitudes from times when sexuality, gender dysphoria and autism were all considered to be mental health issues that could be “cured”. We are not quite at the end of the journey to acceptance.

Sexual orientation and gender expression may fluctuate over the course of person’s lifetime. Can neurological conditions also change and fluctuate?

I have not noticed any real fluctuations to my sexuality since I first became aware of it in my mid-teens. I did not become straight when I married a man.

I have more sensory sensitivities autistic meltdowns of greater severity when I am going through autistic burn-out, a state that resembles clinical depression and happens when I am overwhelmed for extended periods of time.

Over the years the impact of some autistic features may change. Sometimes this may relate to hormonal changes, for example sensory issues can be exacerbated by puberty, pregnancy, and menopause.

What are some of the challenges that autistic and LGBTQ+ people face?

Coupled with the social differences of autism, such as coming across badly at times and having difficulties interpreting neurotypical cues and nuances, at times I have encountered difficulties forming both social friendships and working relationships with other women. Sometimes I have encountered bi-phobia, and my intentions have been misunderstood.

There are many challenges with being an autistic in the social and sensory minefield that is the workplace, but with a combination of formal reasonable adjustments and minor changes an autistic worker can thrive and add tremendous value. I do get overwhelmed when I am in lengthy or frequent meetings, due to the expectation to exhibit professional behaviours and demeanour for extended periods which does require heavy masking.

Autistic people can be tremendously loyal when we have the right support. I have worked for my employer for over fifteen years, which is testament to their supportive and inclusive culture.

What can allies do in the workplace to support colleagues who are neurodivergent and identify as LGBTQ+?

Well that is a big question, which I could talk about at length…

But in brief, we each have a role in working together to build a culture of acceptance, where it is not only okay, but encouraged even, to be open about any difficulties and support needs, an environment where each and every person belongs and can thrive as our authentic selves.

You’ll never run alone

I was due to run with two friends, but one pulled out due to sore calf muscles, the other with bad hayfever. “Sorry to let you down, Charlie” says one in the group chat. “That’s fine”, I replied, thinking “it is sometimes easier to run solo anyway, as I can play the route by ear and I won’t have to bother to socialise”.  Actually I’m pretty sociable when running, side-eye conversation flowing easily. Somehow social running is far less daunting than meeting a friend for a coffee would be. After an hour or so of procrastination, I selected a Spotify playlist called Made in Liverpool, and started running towards the canal.

Just after turning onto the canal towpath, there was a family of moorhens near the bank – a mother and three chicks. I paused my Garmin and took some photos and videos. One chick kept approaching the mother who gave him some of what she was eating, something pecked from the duckweed and lily-covered surface of the dead-arm of the canal. I reflected on how Iggy used to like it when I made him a banana Nutella smoothie or a ham and mayonnaise wrap. At 15, Iggy was quite capable of making those snacks for himself, but he liked it when I mothered him.

Moorhen mothering her adolescent chick

I put my phone away and jogged on, enjoying the playlist. I felt uplifted for a while, and reflected on this. Something about the left, right, left, right, repeating motion of running, and the changing scenery, the sound of bird song, almost always makes me feel calmer.

During lockdown I have been more frequently up close to young animals being cared for by their parents, which for some reason fills my heart with joy. Now I noticed this feeling, and reflected on my early lockdown solo runs, when exercise and health seemed such a treasured privilege, when newborn lambs frolicked in the fields like all was right with the world. Those early lockdown moments had brought me such genuine elation, in the midst of misery and uncertainty. Now as I ran past mallard ducklings, tucked under their mother for shelter, and adolescent Canada goslings, I just felt ok.

The opening bars of “You’ll Never Walk Alone” by Gerry and the Pacemakers played from my pocket.

I listened to the gentle arpeggios, with the fleeting thought “I could learn this on my guitar. I may have to explain that I just love the song, I’m not a Liverpool football fan”. But then I started listening to the familiar lyrics, and was blind-sided by grief.

When you walk through a storm
Hold your head up high
And don’t be afraid of the dark.

At the end of a storm
There’s a golden sky
And the sweet silver song of a lark

Walk on through the wind
Walk on through the rain
Though your dreams be tossed and blown

Walk on, walk on
With hope in your heart
And you’ll never walk alone

You’ll never walk alone

My legs continued to run, but a more familiar song invades my head. It’s a catchy song, real earworm, self-penned by me. The refrain repeats more often than the “nah” in Hey Jude.

“If only I’d had the right reassuring words to say to Iggy when he was struggling, maybe he wouldn’t have taken his own life”

There are other verses too, but no music.

“Iggy said ‘love you, mum’ when we went out that fateful evening. That was uncharacteristic. I should have known something was wrong. My mothering instincts should have kicked in, I should have stayed home and protected him”

And “I did know something was wrong, when I was out. I didn’t feel right. Not just uneasy in an unfamiliar place with people I don’t know, but a sinking feeling like something terrible was going to happen. I should have made my excuses to Si and the band, and got the next train home. Or even an Uber”.

And “Did he even say ‘love you, mum’ or is that just a false memory? Maybe I just wanted him to have said goodbye, and to have told me he loved me, and my brain has fabricated that memory”. That is such a miserable fucker of a verse, I’m surprised Morrissey didn’t write it. Basically lose:lose.

The canticle goes like this “Either he didn’t love you, or he did and you failed to protect him”. Even if I wrack my brains, or have regression therapy to try and remember whether he really said ‘I love you mum’ or not, I know there’s no good outcome to this train of thought, but I still can’t derail it. I’ve even asked Si, “did I seem like I knew that evening that something terrible was going to happen”. He said “You were unusually quiet, now you mention it”.

I know how this song ends… with super responsibility. “I can’t save Iggy now, I know, but I must be able to do something through my advocacy work, so that other autistic LGBT teenagers don’t suffer in silence. I can, and must, save other teenagers who are bullied at school. It’s my destiny, and Iggy’s legacy”.

“Just look at Paula McGowan – she took it upon herself with Oliver’s Campaign to educate the NHS about autism, so no other teenagers unnecessarily die from being given anti-psychotic drugs when they are only having an autistic meltdown. Why can’t I do something like that?” https://www.olivermcgowan.org/

“How can I convince everybody to accept others who are autistic and LGBTQIA, as they are just another kind of normal. Convince those kids they aren’t alone, that I’ll fix this, and they won’t ever need to find a way out. Different is OK. Live and let live. Be kind, be accepting of others”.

“Maybe I could, and should, change the world? I could make the world a better place, as well as holding down my job, keeping my daughters safe, supporting my husband..”

“Maybe that’s too much responsibility for one person. I’m already grieving, and stressed. Maybe I need to practice some self-care? Volunteer less? Put myself first more? No, that makes me a shitty person. And a bad mother. What about my daughters? They might get bullied too, they already feel different. I could let them down too, and lose them too”.

“Just stop it… Keep running. I must complete this 10K, because my ankles are sore, so who knows how many rest days I’ll have to take before I can run again”.

“Now what funny caption shall I put on my Strava? I think it’ll be a quote from You’ll Never Walk Alone. You see, trigger, I acknowledge you. I’m not scared of you, and I’ll even make fun of you a little. I’ll blog these thoughts later, and somebody might find it relatable and helpful. I might be able to help somebody, they’ll feel less alone. It will risk one of those ‘just checking in, how are you doing’ messages, but so be it. At least one person who reads this will armchair diagnose either OCD or PTSD”.

I got home from my run, and Si said “You’ve been gone longer than you said. Good run?” Catching my breath, I say “Yeah it was ok. I saw some baby moorhens, got a little triggered over a song, but I managed 10K”. And thus, we crack on with our day.

I notice again the little plaque a friend anonymously sent us last year, and it hits home again. “Those we love don’t go away. They walk beside us every day”. Iggy joins me on my runs and walks. His presence is not constantly in the foreground of my mind after 15 months, but he follows me more ethereally. He is part of the bigger picture, like the vapour trail that cuts a swathe across the otherwise blue sky.

Week 12 of lockdown, reflecting on Day 1

For me this is now week 12 of lockdown, as I have not been in the office since Monday 16 March. That was a unsettling day with people on the train eyeing each other with suspicion, reluctant to press the button to open the train doors, and an uneasy atmosphere in the office.

This week my elder daughter merrily went back to school, delighted not to be in uniform so she can show off her unique sense of style. I am relieved she has something to get out of bed for now.

My younger daughter independently does home school work, but only the online stuff she enjoys. More often she is playing Roblox while I’m working and/or she chats to her friends on Zoom while frequently interrupting me to request snacks.

Work has not changed much for me, as I was already working from home for half the week. During lockdown I have been starting and finishing work earlier than usual, so we have time to get out of the house for our daily exercise walk or bike ride before dinner. We’ve fallen into a predictable daily routine.

Reflecting on the transition to lockdown, I just re-read the blog I wrote on Day 1, which amused me. How quickly I gave up that idea of home educating, concentrating instead on getting my work done out of the way so I could then try to ensure everybody in the family stays healthy both in body in mind.

How Iggy got his nickname

Here is the story of how Iggy’s nickname came about (many, but not all of you already know, and I realise the similar names of Iggy and Izzy have caused confusion to some).

Ethan (Iggy) was my eldest son, who sadly died in April 2019. He had two younger sisters: Isabel (Izzy) and Jessica (Jess) and one step sibling.

When my ex-husband Martin and I decided to have a baby, our favourite name was Izzy (a character from Hollyoaks). We had a feeling the baby was a girl, so we called her Izzy right from the beginning.

The 20 week scan revealed Izzy had a willy, so we swiftly changed the working title to the nearest boy’s name we could think of, Iggy after Iggy Pop.

Iggy sprang into the world 5 weeks early, and stealthily (the midwives had sent Martin home as they said nothing was happening). This earning him the official name Ethan, after Ethan Hunt from Mission: Impossible.

Most people continued to call him Iggy.

We still wanted our Izzy, and five years later (with two traumatic miscarriages in between) we finally had our Izzy 😍

Lockdown survival tips

Pretty much all of my lockdown survival tips are here in one post.

A very British pot of tea and a packet of hot cross buns (from the freezer, so ignore the March “best before” date). And if ever there’s a time to treat yourself to proper butter, this is it, on toasted hot cross buns.

There’s a bottle of CBD oil too. That won’t protect you from full-blown meltdowns, but it can help with milder meltdowns and anxiety.

Most importantly, always keep a melon in the kitchen, preferably with googly eyes, then if you’re feeling murderous you can sacrifice it with a huge knife.

RIP, Melonie Snicket, and thanks for dying that so that my husband could live on 😎

Sensory sensitivity to noise

#AutismAcceptanceWeek

Yesterday I was completely taken down by my sensory sensitivity to noise. For me, noise sensitivity is not about volume, but I get easily overwhelmed by different competing noises and sometimes by certain frequencies e.g. the low rumble of the air conditioning in the office.

Yesterday the competing noises were my daughters playing Minecraft on their laptops while my husband was washing up and starting to make lunch. He then instructed Alexa to play an 80s playlist. I dialled into a Skype team meeting, and sensory overload ensued. A throbbing headache struck, with flashing lights in my eyes. Even our daily family walk did not shift this headache, and I lay incapacitated on the sofa for two hours.

Awareness and openness about my autistic sensory sensitivities is helpful to me, because I can request reasonable adjustments in the workplace. Reasonable adjustments are just as applicable in the home-working environment as they are in the office. My sensory needs are everywhere.

#Autism #Diversity #Inclusion #Neurodiversity

Excellent blog by Yenn Purkis which really rings true to me today: https://lnkd.in/dtPw55P

Day 1 Home-working while home-educating

Day 1 Home-working and home-educating 23 March 2020

“I’ve got this all figured out”, I thought. “This will be a piece of cake. I am only part-time, and I am lucky to have my husband (a musician) around every day to help…”

First up I Skyped my line manager about temporarily changing my hours to start earlier and have a nice lunch break with my family.

Then I lay in bed catching up on emails and drinking coffee, until realised that was causing discomfort in my lower back. Eventually I had a quick shower then changed into clean daytime pyjamas.

I came downstairs to find both my girls attempting their online homework, but both were struggling and frustrated, not least because the servers used for the work their schools had set did not have sufficient capacity for this sudden increase in demand.

I tried to crack on with some work in Excel, but my work all seemed so pointless and futile, as I’m not a “key worker” and not saving anybody’s lives. I suspect shelf-stackers were getting more job satisfaction than me at that point.

I soon had to stop to cuddle and soothe a sobbing Jess (8), who was feeling unexpectedly sad she wasn’t at school in a proper maths lesson with her friends. I gave some paints to Jess and suggested she paint an extreme weather conditions picture (one of the suggestions in the grid for this week’s topic), thinking I will worry about the mess later.

Then I had to send a tearful and feverish Izzy (11) back to bed, crossing my fingers she had not picked up the dreaded virus at school the previous week, but trying not to think about it.

While I was upstairs tucking Izzy in, I was distracted by the pile of clean laundry to put away. Then I took a break to assemble a chicken curry in the slow cooker (which the kids would later dismiss as “minging” and refuse to eat).

Calmly (honestly) I asked my husband Si to get off his lazy behind and risk taking Jess to Specsavers, as she had inconveniently broken her new glasses.

Enjoyed the peace and quiet, and was able to concentrate better on my Excel spreadsheet work until Jess and Si returned, glasses fixed (probably dripping with lethal viruses, but of course neither remembered to wash their hands).

After work I ate a very late lunch, a fried egg bagel which Si eventually cooked after my series of not very subtle hints (so much for that idyllic family lunch I had envisaged), then started to rant at him for not doing enough to help around the house.

That’s when my low simmer finally reached boiling point. I quickly changed into my running gear and stormed out, for fear of properly losing my temper and having a monumental meltdown. To be honest, I think Si’s life would have been in more danger from me than from Covid-19 if the government had ever prevented running as my daily exercise. He is apparently clinically vulnerable, due to type 1 diabetes, but he’s as strong as an ox… and equally useful around the house.

I really enjoyed my solo countryside run, reflecting on how privileged I am to have my health and to live near such lovely scenery, but that feeling of contentment did not last long. My anxiously whirring mind gradually convinced me that some minor breathing issues were down to the dreaded virus and that I would pass it to my family and endanger their lives (hello, remember hay fever is still a thing!).

I eventually returned from my run, far calmer, hugged Si and thanked him for emptying the bins and cooking that egg bagel. I checked on my girls, who were both feeling much better. I love my family really. Nobody’s perfect.

Work done: A few email exchanges and one MI report.

School work done: One extreme weather picture, reflecting my mood.

I hope you’re all inspired 😎

Anxiety and bereavement

I’m struggling with anxiety again, even though I felt strong over the weekend.

Example 1: When our cat Ermy goes out for longer than usual, then there’s a post on the village Facebook page about a cat that has been run over. My immediate thoughts “Ermy is not coming back this time. My daughters are already psychologically damaged by their brother dying. They love that cat. Now they will never recover. I’ll lose them too. It’ll be my fault, I knew the risks of getting a cat” (fortunately she did come back, but I have the same worry every time).

Example 2: I heard yesterday that somebody in our London office had unexpectedly died. He attended my neurodiversity inclusion presentation last year, and spoke to me on the phone shortly after that about his dyspraxia, dyslexia and auditory processing issues. I immediately assumed that he killed himself and that I should have known he was at risk and that I could have done something to help him (I have not spoken to him since June, and I am an HR systems analyst in the Birmingham office). This was triggering, and I had a tearful meltdown, although other deaths in service at work with no connection to neurological conditions have not affected me at all.

Example 3: There is a 30 day consultation in progress affecting my team at work. Yesterday they announced a meeting has been called for this Wednesday (5 working days before end of the 30 days) with subject “update on structure”. My reaction is to immediately worry that they did not appreciate my feedback on the proposed structure, and have now changed their minds about wanting to keep my role as it is.

P.S. Please do not ban the use of personal phones in the school or workplace. When I was inadvertently triggered yesterday morning at work by the email about the death in service, and although my line manager noticed and her tea and sympathy helped, only a WhatsApp conversation with my husband could get me back on track.

Rant about NHS mental health support

Please just indulge me this rant, without any overwhelming flurry of concerned personal messages. I’m basically OK today, and about to get stuck into some rock painting.

This rant concerns NHS mental health services for adults in my area (Worcestershire).

In the months following my son’s death last April, I realised I require some specialist mental health support, over and above standard bereavement counselling. It’s not just about grief and loss, also the abject horror of what happened and my lack of skills to healthily process trauma.

Party due to my neurology, I don’t grieve in a typical way. I have alexithymia, which means it can be difficult for me to notice and express my feelings. They brew below the calm surface, like a tidal wave. I can compartmentalise and lock difficult things away in a box marked “danger: don’t open”.

I still get pleasure from things I enjoy, and I’m still excitable, but I can swing from OK to broken in seconds. Pychological triggers hit me like a bus, when I’m otherwise OK and often in the middle of something. These triggers could be images or words or music. Intrusive detailed mental images really take me down. I have a vivid mind’s eye, which is both a gift and a curse. Lucid dreams too, with delayed wrench back to reality upon waking.

I went to my GP last April and he suggested I refer to Worcestershire Healthy Minds, which I did in early May. The triage appointment, a telephone consultation, took place in June. I explained what I was going through, but my case clearly wasn’t considered high priority (I wasn’t a danger to myself or others). I was basically OK in June, but by mid-July I was at rock bottom. I was triggered in the middle of a song, in the middle of a choir performance in front of an audience. The trigger, singing Somewhere Only we Know, I remembered my son should have been on his DofE expedition that day.

Finally in December and January I had six sessions of counselling. This was very generic counselling, not specific to trauma. It was easy to steer the conversation away from the traumas I need to process, helpful yet quite superficial. That counselling is now concluded, and I haven’t yet had specialist support with dealing with the sheer abject horror of what happened and what I have been through. The counsellor agreed to refer me to their advanced support team.

I’ve since had a letter inviting me to attend a group psychological skills course, in September. This letter indicated that if I don’t phone them to book onto the course, they would close my case and return me to the care of my GP. Confused much, because this seems like a backward step, I talked to my husband (who is less phone shy than me) and he phoned them on my behalf. They said I have to do this course before I can access any further 1:1 support. He can come along, but not participate (note: neither the GP nor Healthy Minds have ever asked him if he’s ok or needs any professional support).

This course is 6 x 2 hour group sessions starting in September. I assume there will be a further waiting list after that, before accessing any further 1:1 support.

Of course, they do have a crisis team I can apparently contact if I need more urgent support. It’s pretty clear to me that “crisis” only applies when people are a risk to themselves or others. Hmmm… am I likely to admit that, as a mother with two young daughters? I don’t think so. The crisis service also requires a phone call. How many autistic people in a mental health crisis are able to pick up the phone? I had a meltdown last night in which I could barely string a sentence together.

Thank heavens I am privileged to have some great friends and family, who can support me better this. I’m acutely aware that many autistic adults are far more isolated than I am.

I’m convinced that what I actually need is EMDR for cPTSD, but I guess I’ll have to go private to get that. I’ll still go to this psychological skills course, as it may be useful for my mental health advocacy, and I don’t want Worcestershire Healthy Minds to close my case.

Particularly looking forward to attending their 2 hour session about trauma and loss… on what would have been my son’s 17 birthday!

Unsolicited advice from supposed neurotypical

Last June I was on the train to London. I was disorganised, panicking that I’d forgotten my phone charger, rooting flustered through every pocket of my laptop bag, awkwardly asking the management consultant type opposite me if I had dropped my credit card (which was actually safe in my coat pocket).

Later he asked me where I was going and why, so I tentatively explained about my #neurodiversity inclusion presentations I was about to deliver at two of our London offices, talking about #autism from first-person experience.

“Do you tell everyone you meet that you have autism?” he asked. “Oh no, only if it’s relevant”, I replied. He said “You should. Then they would understand why you’re so awkward”.

He went on to tell me all about his friend who was apparently developing a diagnostic tool to pick up autism in children as young as two, to enable early intervention. He pushed his business card into my hand, which I dropped into the litter bin as I disembarked.

Should I buy a sign to advertise my autism, to make neurotypicals more comfortable with my self-conscious body language, lack of eye contact, difficulty with small talk and other social differences?

Or perhaps is it high time people of all ages and backgrounds started accepting people for who they are, not passing judgement and unsolicited advice?

This well-meaning stranger’s ignorant attitude spurred me even more with my objective, to increase understanding of autism and promote acceptance and inclusion.

Autistic kids should be supported as their authentic selves, growing into autistic adults, comfortable in our skin, not trained to mimic societal norms or excuse ourselves.

My younger self would have taken this personally. Older and more confident me made a mental note to jot this encounter down as just another anecdote about unsolicited neurotypical advice.