Autistics, Autodidacts and Autonomy

So it’s done! I completed my MRes (masters in research degree) in September and should get my final result sometime next week. It has been HARD! The modules in research design and methodology, philosophy of science, mixed methods, interdisciplinary methods and public health all stretched me out of my comfort zone. But the individual research project I took on? Rewarding, emotional, validating, illuminating and EXHAUSTING! It’s no wonder that I have been ill since my hand-in week (oh the irony!) I am super proud of the result though and would like to tell you about it. Are you sitting comfortably?

Long term readers of this blog will know that I qualified in nutritional therapy ten years ago, have done a tonne of work on my own health and wellbeing over the years, discovered that I was autistic three years ago and am now a health and wellbeing coach over at Nourish, Align & Transform. So I have good first hand knowledge of how to support my own health and of how to keep challenges at bay that are common to many autistic people, such as chronic anxiety, insomnia and digestive problems.

But what I really wanted to know was, how do other women like me look after their own health and wellbeing? Women like me, who weren’t diagnosed with autism until they were adults. Women like me, who found that they couldn’t easily access support from relevant health services and so needed to take matters into their own hands. Women like me, who had a passion for learning about health and wellbeing but had to take their unique needs and requirements into account before applying information to themselves.

Over five months I read all the relevant academic papers I could get my hands on, designed my study, submitted a proposal, ran, transcribed and analysed interviews, and wrote over 12k words (abstract, introduction, literature review, theoretical framework, methods, findings, discussion etc.) in time for the deadline!

And, wow, the study findings were beautiful! The participants were dedicated and immersive researchers, who had found that discovering they were autistic transformed how effectively they were able to support their health and wellbeing. And yes, diet, supplements and exercise featured but, spending time alone, being in nature, creating and following routines, being creative and stimming* were just as important.

Without the means to use all of these strategies, the participants struggled more with high anxiety, insomnia, digestive problems, chronic pain, overwhelm and fatigue. But when they were able to use their strategies they were more likely to enjoy life, to be physically and mentally healthier, and able to celebrate their own autistic identities.

While I think that this requires further academic study (I’m on it!) I am passionate about making sure the autistic community has access to this kind of knowledge in a supportive environment as soon as possible. So, together with Rhi from AutistRhi I am setting up a resource website with article contributions from other autistic people who have found or developed strategies that positively impact their health and/or wellbeing.

These articles won’t be peppered with generalisations and references, or making any claims to cure or heal. Instead they will be talking about what helps that individual to thrive in what can be an incredibly challenging world. We are hoping to go live in the very near future and we shall be shouting about it on social media once it’s launched!

What else will you find on there? You’ll have access to the summary of my study findings, a list of autistic-led health and wellbeing workshops around the world and toolkit recommendations (such as noise reducing headphones and stim toys). In the meantime we are looking for other autistic contributors! If you feel you have a short (around 400-800 words) post in you and would like to be included then let me know in the comments and we can talk further offline. We aren’t able to pay, but we will include a 50 word bio with links to your social media and a photo.

I look forward to announcing our online launch soon! See you there with virtual champagne and gluten-free canapes…

* autistic people often employ repetitive movements or actions to soothe or focus, a process called stimming. Actions such as using stim toys, repetitive hand movements or rocking are generally considered to filter out sensory stimuli, relieve emotional distress and even amplify positive emotional feelings.

 

Learning to read (again)

Years ago, when I explained to a friend that written words would vibrate and float around she told me that it was a common dyslexic issue. I was surprised as I’d been a fluent reader long before I started school, tested as having a reading age of 13 when I was 7, and was a voracious reader throughout my teens, often reading a book each night until doing an English Literature A level made me lose my love of books for a while. Writing was also easy. I looked into it. I’m not dyslexic.

However…

I have always described my reading style as staring at a passage, catching the words like fish into a net, and then hoping my brain would process them and rearrange them into the right order. In some ways this is not as bad as it sounds. I can skim read a passage of writing fast and pick out the relevant information. This was great when I was at school and hadn’t read something for homework. I could easily skim a few pages and get the gist while everyone else was still getting their books out.

I was also a pretty good sight-reader which got me out of no end of trouble in instrumental lessons and orchestra rehearsals when I’d rarely done the required practice to learn the music beforehand. I could scan a passage of music while playing it and translate the notes, phrasing and chords etc to my fingers very easily. Considering playing and teaching viola and piano was my livelihood throughout my twenties this was a super useful skill!

So why was this a problem?

Headaches. Headaches from trying to slow down and read stuff properly. Headaches from trying to understand sentences that I’d made some sort of anagram with and come up with a new meaning for. Headaches from realising I’d missed some of the poetry and musicality of a phrase and having to read over again. Headaches from those words vibrating and jumping and disappearing altogether. Tricky little buggers.

But a few days ago, in reply to one of my tweets, somebody recommended coloured overlays. I bought a packet of wide bookmarks (designed for dyslexics) in a range of colours and, one at a time, put them over the book I was reading. Yellow, meh. Green, Meh. Purple, pfft. Pale blue…

Wait…   What?

The.   Words.   Stayed.   Still.

I could see every word. Each letter had a clean, clear edge. I could see the words one at a time and in the right order.

Mind.   Utterly.   Blown.

I’ve been reading for 43 years (I’m 46) and feel like I’m just learning how to do it properly!

It’s got its own quirks. I’m going to have to practice reading every word in the order it was meant to be read in. It’s strange. And to be honest, it feels a bit ploddy, a bit pedestrian. Less adrenaline fueled. But on the plus side, a deeper, more sensory experience. I keep reminding myself to slow down and appreciate the journey. To focus on the story. Or the journal article. Or the instructions.

I think it would be worth me looking into a bit more. Apparently it has something to do with visual tracking challenges, which could just be part of my being autistic, or might be to do with dyspraxia (which I think I fit the criteria for but haven’t yet sought a diagnosis for). But in the meantime it’s going to mean practising. Some bigger overlays could be useful. Maybe some computer software. But mostly practice. Lots and lots of reading. Yippee!

Recalibrating (a grumpy post)

“Insistence on sameness, inflexible adherence to routines, or ritualised patterns or verbal non-verbal behaviour (e.g. extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).” from the DSM-5 criteria for Autism Spectrum Disorder

So here’s a thing that I think not many people understand about the majority of autistic people (not all – we autistic folk are as individual as anyone else) and that’s how change can affect us.

Most people now recognise that new routines, changes of pace and transitioning from one activity to the next is difficult for autistic children but they might not realise that it’s the same for autistic adults. Because autistic adults often seem to deal just fine. No public meltdown no problem right? Well, um.. not-so-much!

I’ll give you an example:

Ok, so how about if you, one of my dearest friends, pops round because you were in the neighbourhood. Here’s what will happen. I will jump up and down, hug you (I am a hug freak) and run around wittering and making a pot of coffee because I am truly happy to see you. OK, my reaction might seem a little over-the-top but as you are my dear friend you will already know that I am pretty childlike when I get excited. You are entirely forgiven for thinking that this is the best thing that has happened to me this week and that I can manage this situation.

But here’s the thing. My adrenaline levels will rocket the second I see you walk up the garden path (hence the performing-monkey-on-speed routine), my head will be pounding and I will be worrying because I haven’t had time to script (plan) any conversations (this is totally a thing), clean the house (I have a major fear of being judged) or re-plan my day.

And then, once you leave I will be distraught because I didn’t get to enjoy it properly – sure I smiled and laughed the whole time but the adrenaline will have stopped me relaxing and truly enjoying your visit. And I will have missed the chance to tell you funny and interesting things, to ask you about stuff I know interests you, and to entertain you as you deserve to be entertained –  because I didn’t get time to script. The sheer frustration is overwhelming.

And then, after the disappointment of not being able to be spontaneous (for goodness sakes, you only popped round for a cup of coffee!) s**t really kicks in for the rest of the day. Without the plan and the routine I was expecting for the day I’ve used up brain processing memory that I need for other stuff. When one thing changes my brain can’t neatly compartmentalise it and get on with the next thing. My brain decides that everything is up for change:

• I will struggle to figure out the time and the day all day
• I will mis-plan the next family meal so that it will be late and I will forget to cook part of it completely
• I will walk into my own walls, trip up or fall down the stairs because the layout of the house feels different (strange but true)
• I will do odd things like put my phone in the washing machine (this happened last month and I am still struggling with the loss of my iPhone because I can’t afford to replace my 5SE model and am instead using an old one with a tiny memory and a tendency to drain power unexpectedly – oh the irony)
• everything will feel a bit louder and brighter than usual and it will give me a headache

…and as easy as that, I will lose the rest of the day to a brain that’s been shaken up and tipped out, like a basket of wool that will need untangling before it’s all packed away again. To make it worse, the emergency conversational processing I will have had to do will mean that I will have trouble conversing even with my family for the rest of the day. All for the sake of a dear friend visiting unexpectedly!

What’s more, it’s not just unexpected visitors that sets me up in a flurry of confusion and exhaustion. Changes of routine, changes of venue, new places, unexpected faces, cancelled plans? All of these mess up my precariously balanced equilibrium. And it can take days to recalibrate.

And so, while it seems that I am being unreasonable in not being able to change plans at the last minute; or when I have to back out of a social engagement altogether because other people have been invited this is why. I love that you can be spontaneous, I truly admire that in you. But I can’t join you in your spontaneity. Not without a bit of planning.

I promise a non-grumpy post next time!

Not boredom

This afternoon is one of those afternoons. A cacophony of the oven, washing machine, lawnmowers, birds, someone’s TV, dogs barking, planes overhead, neighbours talking, shouting, swearing, belching hurt my ears but my headphones feel too hot and tight. The light is both too bright and too dim; if I try to read a book then the words jump around; if I close my eyes geometric patterns swirl menacingly across my eyelids. Even writing this is tricky – every word looks like it should have a red wriggly line underneath it. My joints feel cold and greasy. My skin hot and gritty. I am hungry, nauseous and full all at once. My head feels stuck on at the wrong angle and no amount of clicking my neck and shoulders can put it back on right. I can’t settle to anything. Everything seems unsurmountable, urgent and worthless. I am tired. I am restless.

I don’t know what this is and why this happens.

When I was little I was told that this feeling was boredom and that “only boring people get bored.” I didn’t understand why feeling this way made me a boring person but accepted that it was a major failing on my part.

At school and university these days could be torture. Teachers at the front of the class swung in and out of visual and audio focus. Words on the blackboard and page vibrated and floated away. My wrists resisted writing.

I guess that at least I get to look at it objectively as an adult. This day will pass. Maybe tomorrow I will know what it is that I want to eat, read, wear and do. Perhaps my bones will feel like they are in the right place, and my skin will fit. Hopefully sounds will make sense and I will be able to process the contrast in shapes, shades and hues. For now I will drink plenty of water, walk barefoot in the garden and appreciate that my husband and daughters understand that today I can’t make words come out right and that I am doing the best I can.

It’s definitely not boredom. Does anyone have a word or an explanation for it?

 

Educating Flojo

My undergraduate BA in music in the early 90s was a bit of a wash out. Learning life skills and social skills took precedence as I attempted to learn the rudiments of house sharing, balancing a post-rent-payment budget of £7 a week, and basic self-care skills such as cooking, using the launderette and not burning the house down (that’s a whole other story or two).

I worked hard in orchestral and chamber rehearsals but lacked the motivation to practice my own solo music; turned up to lectures but couldn’t focus on a word I was told; coordinated a record breaking rag-week, fought for institutional ethnic inclusivity and threw myself into voluntary work assisting on art, music and drama workshops for disabled people in connection with the City of London Sinfonia – but didn’t ever figure out how to use the library, references or a computer.

There were no grey areas in my grades. I either aced courses or failed them. Autistic burnout caused me to leave town for a few weeks while I decided whether or not to continue with my studies; and a breakdown in communication meant I ended up short of credits and had to return for a fourth year while forfeiting my honours. I repeatedly confused, irritated, offended, and upset friends, housemates and lecturers while battling chronic anxiety, depressive episodes and executive dysfunction. My essays, handed in late and illegibly handwritten, were a mess. My room was a mess. I looked a mess. Hell, I was a mess.

But, this return to academia twenty five years later, thanks to a place offered on a research masters (without the necessary prerequisites of a 2:1 in a relevant honours degree but taking into account extenuating circumstances and gained experience) has offered a whole new outlook, increased confidence and widening of comfort boundaries. And why? Because of people’s unquestioning generosity but also my own new understandings since my autism diagnosis in 2016.

My husband patiently demonstrated how to use the automated system to take library books out and also how to return them. Twice. I still don’t use automated check-outs at supermarkets but glow with pride when I check a book out.

A classmate showed me how to log onto the university computers, send articles to print and then log in again and print them off in the designated print rooms. Magic!

Another showed me how to format assignments and automate references within a document.

Another showed me how to buy my bus tickets from my phone; proof-read my first assignments and explained how to use more authoritative language. He also recognised the signs of me going into meltdown from sensory overload during a lecture, swiftly got me out of the lecture room to recover and then later collected my books and drove me back to Bristol rather than me having to navigate crowds and public transport.

It takes a village…

Yet another classmate rescued an assignment that my laptop dramatically lost just days before the deadline.

The IT folk cheerfully sort out my laptop, WiFi, passwords and software for me on a regular basis.

My course leader helped me to find my way around campus and checked that I could access quiet places without me ever having to ask or explain that I needed that support. Most days someone has to help me open a door (apparently most of them are automatic. Maybe they just don’t recognise me).

On two separate occasions strangers recognised impending meltdowns, calmly led me to quiet, outdoor spaces and patiently waited until I was ready to rejoin other people. (Once was in reaction to a fire alarm – it wasn’t fear of fire that made me cry and shake, it was the change of pace, the noise, the confusion.)

All this support may sound trivial but it has all been profoundly helpful. Until I knew I was autistic I didn’t know that it was ok to ask for or accept help for these things. Autistic people are recognised as having a spiky profile. My spiky profile comes with difficulties adapting to new environments and situations; overwhelm at noises, lights, smells, people and unexpected changes. It also comes with a high IQ, an ability to see patterns and links across disciplines such as health, philosophy, art and science; and skills in effectively disseminating information to a range of audiences.

I’d not considered blogging all this until I messaged a shortened version to a super intelligent and accomplished autistic friend this morning and she replied: All that stuff? I know how hard it is. I have tears. I sometimes forget how much the experiences I thought were embarrassingly pathetic are familiar to my autistic sisters.

Accepting generous offers of help in my areas of challenge have meant that I’m succeeding this time around. I have learned more in the last six months of study than I did in four years in my twenties. I start my assignments in good time, plan them, give myself time for multiple drafts and submit them hours, if not days before the deadlines. So far all my assignments have been marked at merit or distinction level. Time will tell if I can keep this pace up. I need a bit of help from you too – please keep your fingers crossed for me!

Walking in a straight line

I’m not sure how its nearly eight months since I last posted. I started a Masters in Research in September and had to learn a whole new way of writing; everything meticulously referenced and using fancy words ending in “ology” like ontology, epistemology and qualitative methodologies. Turns out I’m actually pretty good at it but it is hard to swap back and forth between that and blogging which reflects my natural verbal speech patterns and tendency to make up words.

But I wanted to get down in writing a thing that happened and the effect it had on me. And I wanted to write in my usual way. With plenty of alliteration and creative phrasing. And a distinct lack of either Harvard referencing or correct punctuation.

Last month I fell over.

My overdramatic tip, skip n flip didn’t result from any kind of extreme sport; from a slip on ice or trip over an large obstacle. I was just walking along a busy pavement (happily pondering a health and wellbeing workshop I’d just given to some exhausted looking trainee teachers) when I did some kind of slow motion stumble, stagger and swoop towards the ground; spraining my ankle, creating large and bloody holes in my knee and elbow, jarring my wrist and shoulder and still managing to end up on my back with my feet in the air in the process.

So graceful.

I posted about this on Instagram and many of the (sympathetic) comments and DMs that came back included “that’s so you”, “you haven’t changed”, “only you!” And its true. People who have known me over the years have been there for me when I’ve been hit by cars (five times, luckily no serious incidents), knocked myself unconscious walking into walls; fallen off pavements and tripped over my own feet.

And why? Because I forgot to concentrate on walking in a straight line. Maybe I let my mind wander or something caught my eye; perhaps I misjudged a distance or the speed of an oncoming car. Probably I was listening to someone talk and that took away from the focus I needed to pick one foot up and put it in front of the other.

I’ve been told often that I have a characteristically determined walk and it has taken until recently to realise why. I am consciously reminding myself how to walk most of the time I am walking. Straight back, look ahead, swing my legs from the hips, keep it fluid, feet up… no not that much, look ahead, don’t swerve into that person… stick to the left left! Smile! FEET UP dammit they said hello, smile, say hello, straight back breathe…. it’s ok you can stop smiling now they’ve gone past, swing my legs from the hips, feet up, back straight…

If I’m walking or even running somewhere quiet, along paths that I know well, where there are no people and their sodding “it’s ok, he just wants to say hello” dogs then I’m fine. I can go all zen-like; or even go into a slow-mo Matrix mindset style, avoiding holes or rocks with ease and walking in a perfectly straight line. Or if I’m chatting with someone who knows to grab my arm every so often when I stumble and wait for me to recalibrate which way is up; that’s ok too. More than ok in fact. It feels really good to walk like this. Like I’ve activated some kinda cool superpower. Look at Flo, walking without constant instruction – how does even she do that?!

But I am wondering if other people get this too. If there are others using up valuable cognitive energy talking to themselves like they would to a child riding a bike for the first time. I’m not suggesting I’d be learning multiple foreign languages, composing symphonies or pondering complex equations (or indeed any equations) but I wonder what it might be like not to have to maintain that constant stream of instructions getting safely from A to B. What might that feel like?

p.s. the featured photo is not me. It’s a stock photo. But that’s kinda how it all went down…

 

Autism Awareness

#AutismAwarenessMonth – a.k.a April – is a tricky one for many autistic people as commercial autism charities bombard social media with publicity stunts to raise awareness of autism prevention-and-cure research fundraising opportunities. Sadly this publicity is very rarely generated by autistic people themselves, but by parents who fear autism itself, and by profit led autism charities with interests that lie in research and autism training that rarely benefits and in fact often harms autistic people.

Somehow I missed all of this hype until two years ago.

And then my life took an unexpected turn.

During Autism Awareness Month 2016 a Standard Issue article by the fantastic Sarah Hendrickx ended up in my twitter feed. And it was about being an autistic woman.

I read it through several times. What Sarah had written resonated strongly with me. Which was odd because I wasn’t autistic. Her experiences were normal weren’t they? Same for everyone? No?

I did a bit of googling. Did a few online tests. Googled some more. Hmmm….

My parents kindly offered to pay for me to get a private assessment and within three weeks I had a diagnosis. I was autistic too!

And then everything got a little bit crazy. A diagnosis at 43 means replacing the filter through which you have interpreted your entire life thus far. It means going deep. It means sifting through every memory you have of situations or conversations that didn’t make sense, of relationships that didn’t work, of having to behave in a way that was entirely confusing to you, of breakdowns, meltdowns and shutdowns; of the accusations of being stupid, lazy, uncaring or being over-dramatic; of trying to fit in and failing; of being tired all the damn time, of having your meltdowns used against you, of being laughed at and talked about for saying or doing things that you didn’t know were “wrong,” of not understanding people, having your natural stims laughed at, of being blamed for not-reaching-your-potential and of wondering why *everyone* seemed to be able to navigate bright lights, loud noises, extremes in temperature and crowds of people except you. It means re-writing your entire life story from the perspective of the person hidden so deeply under a facade of who-other-people-wanted-you-to-be that you didn’t even know who you were yourself – to the perspective of the person you were actually born to be.

That’s quite a lot to process.

But the last two years have been incredible. My relatively newfound Autism Awareness has meant that I have now made friends that truly get me, that I don’t have to mask with, and that communication with is startlingly and naturally easy. It has meant that I gained the confidence to jack in the job that made me ill and return to my passion: health and nutrition. It meant that I have been able to work with autistic clients to elevate their own emotional and physical wellbeing – to be thriving autists rather than surviving autists. And that I am now able to give workshops in alleviating stress levels for autistic people. Autism Awareness has meant that I have learned to forgive myself for all the things that I thought were signs of being massively inadequate and to begin to appreciate my own unique skills and attributes.

How do *you* become autism aware? You learn from autistic people! You read books and blogs by autistic people. You attend conferences and workshops or watch videos presented by autistic people. You take the time to listen to your autistic friend, child, student or co-worker without judgement, embarrassment, interruption or preconceptions.

And, if you are autistic yourself? Let’s flood the hashtag with our own Autism Awareness! Elevate the autistic voices with recognition, with love and with joy.

Happy Autism Awareness Month my friends! xx

If you are interested in the workshops that I offer please click here.

If you are interested in health and nutrition coaching with me please click here.

How Not to Prepare for a Meeting…

On Monday morning I had a meeting. A meeting for some potential freelance work that I really wanted. An informal chat with somebody I knew enough about via social media to already know that she was lovely. Two short bus rides to get there. The promise of coffee at the other end. Easy right?

Generally it’s good to be clear what your mission is before having a meeting. But because I wasn’t entirely sure what the meeting was going to be about (no scripting – yikes!) I decided that all I could focus on was how I presented myself. I wanted to appear calm and confident; and I wanted to exude a natural inner glow. So this is how I prepped, autistic style*…

Sunday morning

1. Decide, half way through washing up the breakfast pots, that I urgently need to cut my hair. Hack off a good three inches over the bathroom sink. Realise I’ve been a bit overenthusiastic with the layering and that I will have to straighten the hell out of it for a few weeks while hair calms down. Good start Flo, good start!
2. Feel the need to neaten up eyebrows. Pluck. Pluck some more. Finish washing up. Pluck even more…
3. Now that I’m up close and personal with the mirror (which I usually avoid) I note a few inconspicuous blackheads. Do the only rational thing – pick the hell out of them and so leave conspicuous craters in my face.

Sunday night

1. Wonder what kind of bus ticket I need to ask for. I don’t know. Try to script pithiest question I can for bus driver considering I don’t know what I’m asking for. Fall asleep still worrying about this.

Monday morning

1. Get family all sorted and off to school for the day.
2. Sit on bed trying to figure out what order to get ready in and what bus ticket to ask for.
3. Get dressed.
4. Try to cover up the craters I made in my face the day before – without much success.
5. Spend ages straightening my hair as the layers have sprung up overnight so much that I look like I have stuck my fingers in a live socket.
6. Make several attempts at drawing back eyebrows until they vaguely resemble actual eyebrows again.
7. Note that it is raining very heavily outside, meaning that points 4-6 will have been a waste of time before I even arrive at meeting.
8. Change outfit for the day. First one wasn’t warm enough.
9. Clean bathroom thoroughly in case I don’t survive bus journey and strangers see grubby sink. You never know…
10. Realise that I am running out of time if I am to get the bus before the one I actually need to get in order that I am not, under any circumstance, late.
11. Change outfit again for the day. Second one looked weird.
12. Make a note of earlier points in order that I will remember and be able to write this post later in week.
13. Text my friend Rhi because I can’t figure out what to eat for breakfast and I still don’t know what bus ticket I need to ask for. These are tricky questions for her to answer as she a) does not know what food I have in my house and b) has never bought a bus ticket in the Bristol area before because she lives and drives in Wales.
14. Dump contents of bag all over table in order to run through checklist: charged phone, headphones (last time I forgot these on the bus I nearly cried for the whole journey), essential oil roller (because bus smells make me nauseous), sunglasses (it is dark and rainy but I sometimes need them to dull visual distractions), house key, blue biro (because black biros are weird), wallet, money. Put it all back in. Pour it all back out again to check. Repack.
15. Put on boots.
16. Change outfit again. Third one didn’t work with boots.
17. Breathe. Ground myself. Berate myself for not doing this earlier.
18. Run for bus, checking bag constantly to make sure I still have phone, headphones and money. Worry about what ticket to ask for while I wait ten minutes for the bus.
19. Forget scripted question and babble incoherently at bus driver who kindly figures out ticket for me and helps me with card payment because I can’t work out machine.
20. Panic for entire journey and arrive with a full fifteen minutes to spare.
21. Take deep breath, knock on door, smile and do my best impression of a calm and composed person.

Anyway. My meeting with the very lovely Lizzie went well and as a result I have, this week, been recipe developing for State of Liberty’s wonderful online wellbeing retreats – Huzzah!

I think it will be a while before I go to another meeting though…

*I do know that many people who are not autistic prepare for events in a similar way. That’s ok. You are in good company!

The Authentically Autistic Health Files: Florence Neville (Me!)

The Authentically Autistic Health Files are a celebration of health and wellbeing practitioners who, like myself, are both autistic and working with clients who are autistic. As you might expect, our unique life experiences, understanding and skills give us particular insights into many of the challenges that our autistic clients may have.

Please do contact me if you would like me to send you a questionnaire so that you can be featured on this blog. You are welcome to remain anonymous and I will always get you, as the featured practitioner to approve copy before I post.

As requested by the other practitioners who’ve filled this in already – in my own words, here I am:

Florence Neville: Health and Nutrition Coach

florenceneville.com

Basic Biography

Although I have had a lifelong interest in health and nutrition (I remember secretly musing on diet plans for my peers when I was only eight years old and my earliest career choice was to be a doctor or nurse!) I actually trained in and gained my degree in music; meaning that my twenties were spent performing, recording, teaching and managing the shop for a violin workshop.

I left the field of music in order to focus on bringing up my daughters in my early thirties and studied for my Diploma in Natural Nutrition when they began school. Unfortunately not long after qualifying I had a breakdown which crushed any confidence I had to feel able to offer advice. Instead I took a job at my local pharmacy – a job that, while it taught me a great deal, was highly unsuitable to my neurotype.

Despite, in retrospect, clearly fitting the criteria I had no idea that I might be autistic until a chance reading of this article by Sarah Hendrickx in April 2016. Luckily I was able to get an appointment with her soon after and was given a diagnosis of Aspergers within the month. A complete reassessment of my life and then learning to work to my autistic strengths gave me a boost in both understanding and confidence, resulting in me feeling able to leave my pharmacy job and re-start my nutrition practice in the Autumn of 2017.

Your Health Business or Specialism

Over the years I have thoroughly researched and experimented with various dietary models including vegetarian, low fat, low calorie, vegan, raw vegan, wheat/dairy/sugar free, paleo, primal, low carb, zero carb and traditional. They all have their pros and cons, but the crucial point is that not one of them is suitable for everyone at all times. What suits me may not suit you, and what suits me now may not suit me in ten years.

So, part of my job is to really get to grips with an individual’s nature and nurture make-up in order to be able to provide a set of guidelines that will enable them to heal most effectively given their genetics, symptoms, lifestyle, budget, and geography. Most of these guidelines will be dietary but helping them to understand how to use light, movement, sleep and rest patterns are also crucial. Seeing a client’s health and wellbeing transform is an incredible honour and I find it really exciting.

How Does Being Autistic Impact Your Health Practice?

I think that my neurotype gives me a specific and unique skillset to work with. I love to research and I am good at spotting patterns, or indeed spotting broken patterns in a client’s health in a way that conventional medicine is not always able to. For instance, if a client is experiencing a difficult menopause I am looking to balance her hormones but I am also working out why that imbalance occurred in the first place; it might be that her adrenal system is overtaxed or that she isn’t eating enough of the building blocks to support progesterone production; it might be that she is eating too many oestrogen mimicking foods or that her liver is overloaded; maybe it’s an emotional issue or perhaps the symptoms are actually due to something else altogether.

I like being able to break down a complex issue and offer it back to an individual in a way that is both easier to understand and gives them the practical tools necessary to work with their symptoms. My role is largely to educate and empower. I have noticed that many autistic people have a unique skill in this area. We don’t tend to accept what we are taught at face value but instead tend to take a different route when internalising a collection of information. “Why?” is of more interest than “What?” when we are figuring out “How?” and so we love to explain how we got to that answer. Having said that, it’s not so easy to explain when we suddenly just know the correct answer without any apparent route whatsoever!

What Considerations Do You Take into Account with Autistic Clients?

My autistic clients tend to have thoroughly researched their own health issues well before making the decision to book a consultation with me. They have often been repeatedly fobbed off by doctors who have not been able to spot patterns and so have tried to self-treat (or just ignored) symptoms on an individual basis. As autistic clients tend to have a more complicated health picture than non-autistic clients I tend to have more “knot unravelling” to do.

I have also noticed a tendency for autistic clients to apologise at the outset for being blunt, outspoken and needing to be given a lot of background information. In fact, this is how I much prefer to work – these qualities make my job easier!

While I don’t seek to treat autistic clients differently I am still learning quite how wide the range of executive function challenges are from one client to the next. This is why a dialogue is so important – it’s not appropriate to just issue information and a set of recommendations based on what will make the most difference to an individual’s health if they will be overwhelmed by the information and not do any of it. Meanwhile some clients prefer to jump in at the deep end from the outset.

Do You Have or Have You Had Specific Health Challenges of Your Own?

Over the years my own health challenges have included anxiety, depression (including five major breakdowns,) insomnia, chronic constipation, compulsive eating, acne into my late thirties, frequent and extreme bouts of fatigue, multiple bouts of tonsillitis (including emergency surgery for quinsy,) asthma, aching joints and frequent lung infections.

I find that, for me personally, all of these have responded well to a diet based on healthy fats, organic vegetables and meat; and well sourced supplements together with some lifestyle changes and certain naturopathic techniques. I am in better health now, in my mid-forties, than I have been at any other time of my life! I also see an amazing acupuncture and zero-balancing practitioner in Bristol and she has worked miracles when I need extra support.

What Are Your Own Health and Wellbeing Routines and Non-Negotiables?

I require a great deal of down-time. Clean air, sunlight, organic and minimally processed foods; eight hours sleep, walking and periods of silence are crucial for me to remain physically and emotionally healthy. Paying attention to the seasons in terms of food and lifestyle keep me connected and grounded. Working with varying energy levels over the course of my menstrual cycle is vital. And, while I don’t drink much, really good coffee makes me feel good!

Sensory Toolkit

The autistic community is generous with tips on navigating the outside world. I learned a lot from my Twitter friends! Since I learned to keep a “toolkit” in my bag at all times then being out and about causes far less stress. My kit includes both blue-blocking glasses (for the rare occasion that going into a fluorescently lit supermarket or department store is unavoidable), sunglasses, ear-plugs, headphones, rescue-remedy spray and a hanky doused with essential oils.

Meltdowns and Shutdowns

My meltdowns and shutdowns are rare these days but are generally triggered by being overwhelmed (social and/or sensory), by intake of junk food or by mould exposure. I need to be able to escape either to a quiet and dark safe place or into nature; I need calm reassurance (because I am generally frightened by my reaction) and I need grounding. It will often take me several hours or even days to recover, during which I will likely be mute and unable to pull my face into any kind of expression. I have been incredibly lucky that my husband has never once assumed my reactions to be tantrums and sulking and has always instinctively known how to support me.

What Are Your Plans?

I am really excited that there is now a growing understanding that nutrition, done right, can support autistic people to truly thrive and play to their own incredible strengths; and I love that I have the opportunity to help drive that forward in my practice.

My pie-in-the-sky dream is that one day I can be part of a linked practice that brings together autistic practitioners (nutrition, bodywork, herbalism, coaching etc.) with someone who can effectively deal with the day to day stuff (answering the phone, appointment setting and dealing with the finances) for those of us with executive functioning issues. Maybe one day…

Who Are Your Health Inspirations?

So, so many… I am always inspired by people who push the boundaries in health fields. I would recommend reading anything by Nora Gedgaudas or Dr. Christine Northrup. I love listening to the range of guests on the podcasts The Lifestylist, Bulletproof Radio and ReWild Yourself. Mark Sisson’s website is a fantastic resource.

Do You Have any General Advice or Closing Words?

Balancing rest and play is crucial. I hibernate in winter so that I am more able to get outside and be part of things in the summer. If I have been sociable on any one day then I will need at least one day to recover. A good night’s sleep is crucial if I am to be able to even speak to anyone the next day but that sleep is only possible if I have nourished myself well during the day.

 

The Authentically Autistic Health Files: The Silent Wave

The Authentically Autistic Health Files are a celebration of health and wellbeing practitioners who, like myself, are both autistic and working with clients who are autistic. As you might expect, our unique life experiences, understanding and skills give us particular insights into many of the challenges that our autistic clients may have.

Please do contact me if you would like me to send you a questionnaire so that you can be featured on this blog. You are welcome to remain anonymous and I will always get you, as the featured practitioner to approve copy before I post.

In her own words, here is The Silent Wave:

The Silent Wave (a.k.a. Laina Eartharcher.)

I specialize in Functional/Integrative Medicine. I earned my certification last year as an Institute for Functional Medicine Certified Practitioner (IFMCP), one of 13 different sources of post-doctoral training.

I’ve also studied Functional Neurology from the Carrick Institute, completing 21 of the 24 required classes before discovering and switching to Functional Medicine. Since then, I have begun to gravitate toward – and carve out a niche of–people who can’t seem to find answers and relief anywhere else.

I get the “weird stuff”, the complex and multi-dimensional cases, and I enjoy solving them.

thesilentwaveblog.wordpress.com

Basic Biography

I’m Laina E, 40, from South Texas, US. I changed university majors 8 times before discovering integrative medicine at age 25-26. Once, in very poor health at age 23, I discovered natural healing and integrative medicine, which prompted me to get into the field to help others.

My Asperger’s/autism discovery happened much, much later, at age 38.5, while perusing research articles in medical journals. My current setup is self-employment, co-ownership of an integrative medicine clinic with my partner. I work very part-time, and I’m very selective of the people I work with. I juggle work-life balance, and I currently struggle with motivation issues.

Unrelated facts: I love martial arts, cats, Texas, world philosophies/religions, nature, digital art, writing, road trips, and the desert.

Your Health Business or Specialism

My main health-related interests are: biochemistry, nutrition, multicultural health systems (Chinese, Japanese, Native American, Indian/Ayurveda, Egyptian, etc), microbiology, pathology, genetics, toxicology, endocrinology, gastroenterology, hepatology/detoxification.

How Does Being Autistic Impact Your Health Practice?

There is an *absolute* impact (lol).  Being on the spectrum gives me the extra ability to delve deep into an issue and tenaciously latch on to it, without letting go until I’m satisfied. For example, I have spent a full 8 hours straight researching the biochemical metabolism of Lysine (lol).

I’m a perfectionist.  I balance the scientific with the artistic in my practice, in terms of creating graphical/visual patient education handouts and summary reports for patients.  So, Asperger’s/autism is a superpower for me.  It helps that human biochemistry and solving mysteries/puzzles are special interests for me.

But it is also a disability as well.  It is extremely difficult for me to meet with people; I cannot take walk-ins or appointments on short-short notice, nor can I see more than a handful of people in one day, nor can I start before 10am and nor can I got much past noon. And definitely not on Mondays (too anxious) or Fridays (too fatigued).  So, my Aspergian/autistic condition does limit me in that way. There’s also the social awkwardness and an incredible energy expenditure devoted to masking my natural autistic traits in order to “look ‘normal’” and gain the trust and acceptance of others.

What Considerations Do You Take into Account with Autistic Clients?

I haven’t had too many people on the spectrum yet. I give them a long leash, helping them find ways to work my recommendations into their daily routine. I make it clear that they can be themselves in my office, including stimming, lack of eye contact, expressing themselves in a way that comes natural to them, etc. We can meet in person or by phone (if they don’t want to leave their house). I’m also looking at setting up Skype and email programs, or perhaps secure 2-way online chat, but haven’t moved on that yet.

Do You Have or Have You Had Specific Health Challenges of Your Own?

Oh lord yes (lol).  I have 3 autoimmune disorders (including hearing impairment that is getting progressively worse; thyroid issues that sap my energy and motivation; and neurological degeneration that makes me clumsy and compromises brain function at times), EDS (Ehlers-Danlos Syndrome or hypermobility spectrum), and I’m entering a rough pre-peri-menopausal stage. I also have histamine excess, a herniated disc in my neck, and post-traumatic stress issues, along with sporadic depression, dental problems, Non-24 sleep disorder, and documented heavy metal poisoning.

Support – I rely heavily on my partner. Very heavily. I try to eat a clean diet (although I could do much better!).  I try to get plenty of downtime. I work in the office 3-4 days a week, usually going home at lunch. I take Traditional Chinese Medicine herbal formulas and nutritional/herbal supplements. I get semi-regular acupuncture and spinal decompression treatments. I text my friends and family. I blog, although not as much lately. I also keep a journal blog, which I’ve been spending more of my time on lately. I do plenty of leisure activities. I do need to get more physical activity and mediation, though 🙂  I also have two lovely kitties!!

What Are Your Own Health and Wellbeing Routines and Non-Negotiables?

I must be gluten-free 100% of the time or I crash. I must have a fruit and vegetable smoothie at night or I feel crappy. I must take care what music I listen to, or I can get depressed or hostile. I must avoid subjects that I’m hyper-empathic to. I must be on the couch, with the lights and TV on, doing things on my laptop, in order to fall asleep. I must get cuddle-time in with my kitties. I must journal on my journal blog. I must go outside (in the winter) for about 20 minutes every night to cool down my nightly hot flash.

In the summer, I must have sushi to keep me balanced. In the winter, I must have more beef and chicken to keep me balanced. I should start drinking more herbal tea; I felt my best when I was doing that.

Sensory Toolkit

Weighted blankets!! OMG these rock. Those are more of an inside thing, though. As for going outside, I rarely do. When driving, I must have my iPod hooked into the truck stereo and be able to sing along. I must have my iPhone to play with when out and about. My husband does all the talking for me if we have to interact with anyone (like at a restaurant, the grocery store, etc).

Meltdowns and Shutdowns

Too much stress, too much peopling, too low blood sugar, certain times of the month, criticism, bullying, assumptions or accusation especially if false and/or unfair, animal cruelty, dealing with complaining or otherwise obstinate patients, financial woes, etc.  Lots of triggers LOL. Excess noise or harsh lighting, etc.

What Are Your Plans?

Spirituality, meditation, different means of exercise/physical activity, etc – personal areas of health interest/research. As far as our practice, I’d love to incorporate more personal training, more massage therapy modalities (Rolfing, etc), more Ayurveda, yoga, etc.

Who Are Your Health Inspirations?

IFM and Dr Mark Hyman have been inspirational.  www.ifm.org and  www.drhyman.com

Do You Have any General Advice or Closing Words?

I wish I would’ve gone a slightly different path in terms of schooling, but that’s neither here nor there at this point 🙂  Above all, I must learn to take care of MYSELF so that I can take the best care of others that I possibly can. Set the example; cultivate what people WANT – the energy, vitality, health, radiance, etc.

It’s easy to say (and hard to do), but don’t worry about the financial aspect. Seriously, just focusing on each patient and moving from one patient to the next, focusing on each in turn, will automatically generate the income. Also, I wish I would’ve known not to sell myself short! I gave WAY too many discounts and undervalued myself way too much in the beginning, thinking I was doing people a favor. Never apologize for the need/desire to be paid sufficiently for our services. Never feel guilty for expecting others to uphold their end of the Law of Fair Exchange. People do NOT respect someone who gives their time away – I may have thought I was doing them a favor, but actually I wasn’t. It backfired every time and I dang near burned out my first and second years in practice. Sometimes I’ve got to put my foot down.  If I give an inch, some will take a mile; boundaries are important.

It’s OK to say no and/or draw a boundary. I can’t control how others will respond to that. It took me a long time to learn that I will never please everyone because some people 1) have unreasonable, unrealistic, impossible expectations that NO ONE will ever meet, and/or 2) have decided to be angry and unsatisfied no matter where they go or who they deal with (even at the grocery store) because they’re simply unhappy people. There’s no cure for that, so I had to stop beating my head against a wall (figuratively) trying. 🙂