Life as a neurodiverse-high-functioning girl. . .

Introduction

"Autism: a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts".

 

I thought the Oxford English Dictionary rocked, but that's its definition of autism and as far as I'm concerned, that sucks. The definition is great from the point of view of picking the easiest diagnostic criteria relevant for the under fives, but it's a very simplistic description of what autism is and misses the key factor - that neurodiverse (autistic etc) people have neurons that are different, at a very basic level they look more like a baby's neurons under a microscope, and they are much more sensitive and have a much higher level of interconnection and distribution of function. I'm not neurotypical, I don't want to be, I'm too fond of the sweet that comes with the sour of neurodiversity.  You could say that I'm very well suited to being neurodiverse because I love my pattern recognition and recall, I like that I see all the details all the time, I treasure the connection I have with all animals. Plus, while there are pros and cons to IQ as a measurement, taking it as a broad analogy to processing power, I'm also very lucky, I have a high raw IQ that comes "down" by 40 points there or there abouts to the "gifted" range through coping with neurodiversity, and I strongly suspect those people who really struggle with neurodiversity and things like social interaction are people whose IQ comes down into the "lower than average" range even though they start "gifted". I wanted to write about what it's like to be a neurodiverse high functioning person, because there's an awful lot being written right now that assumes a very different type of person to me is what "autism" looks like, and that that person has the capacity for terrible violence against those around them, which is just not true.

 

Why "neurodiverse" not "autistic"

I'm going to talk about being neurodiverse (see http://en.wikipedia.org/wiki/Neurodiversity) and neurotypical, because I think "autism" is as specific as saying someone has the "common cold", and "aspergers" basically means someone who is autistic but still smart and capable of speaking to people, which I don't think deserves to be a diagnostic classification, so let's be general. Also I'm a special case, not only is my brain neurodiverse, but my motor and sensory neurons are neurodiverse too and I lack the three sensory filters that neurotypical people have in their brain to slow sensory information down to a point the brain can cope with it.  The technical term is dyspraxia http://en.wikipedia.org/wiki/Developmental_dyspraxia. But here's the tricky thing, I have a number of symptoms that belong to both autism and dyspraxia, such as being very sensitive to touch, which manifests by things like being picky about clothing materials and cutting labels out of clothes. So neurodiverse, notwithstanding the fact that it's the "current" thing to call yourself if you're autistic, strikes me as a better description.

So what's it like being neurodiverse

This http://www.rdos.net/eng/asperger.htm is a lovely theory (although it should but doesn't highlight that everyone's carrying some Neanderthal DNA regardless of race) that matches my experience and also a very good questionnaire http://www.rdos.net/eng/asperger.htm#Aspie-quiz that gets at the issues that neurodiverse people experience on a daily basis; the sensory issues, aspie abilities and "obsessions" in particular are what to me define being neurodiverse. 

Sensory Issues

1. Do you notice small sounds that others don't, and feel pained by loud or irritating noise?
2. Do you have a very acute sense of taste?
3. Do you feel tortured by clothes tags, clothes that are too tight in certain places or are made in the 'wrong' material?
4. Are you sensitive to heat, cold, wind and/or changes in air-pressure, humidity etc?
5. Do you see yourself as sensitive?
6. If you have to be touched, do you prefer it to be firmly rather than lightly?
7. Are you fairly insensitive to, or have unusual reactions to, physical pain?
8. Are you sensitive to electromagnetic fields?

Aspie abilities

1. Do you have unconventional, often unique ways of solving problems?
2. Do you focus on one interest at a time and become an expert on that subject?
3. Is your imagination unusual, with unique ideas that others don't have?
4. Do you have one special talent which you have emphasized and worked on?
5. Do you take an interest in, and remember, details that others do not seem to notice?
6. Are you very gifted in one or more areas? 

Obsessions

1. Do you become frustrated if an activity that is important to you gets interrupted?
2. Do you prefer to wear the same clothes and/or eat the same food every day? 
3. Does it feel vitally important to be left undisturbed to pursue your special interests?
4. Do you need to sit on your favorite seat, go the same route or shop in the same shop every time? 
5. Do you love to collect and organize things, make lists; diagrams etc? 
6. Do you have obsessions or compulsions (repeated irresistible impulses to do certain things)? 
7. Do you have very strong attachments to certain objects, e.g. a favorite cup or a favorite towel and really need to have that precise one? 
8. Are you punctual, conscientious and perfectionist?  
9. Have you experienced stronger than normal attachments to certain people?

The good bits - Patterns, memory, connection with animals and detail

Taking the theme on from the "Aspie" abilities, the things that define my day to day life are my abilities that I almost certainly got from my disability.

Pattern recognition

I have very very good pattern recognition, almost uncanny, I can just see one piece of a fact pattern and from that extrapolate out to the whole if I've ever seen it before or something similar. Hard to explain this in more detail, but it's an incredible strength that lets me puzzle out all sorts of things.

Memory

My memory is also very good. I believe most neurotypical people's experience of time is yesterday and then degrees of fuzziness thereafter. Mine is a delicate spiral with lighted points curling downward into darkness, with a distinct place and feeling to time in the past by days, months and years, and it really does go all the way back to pre-three years old. The lighted points are places I regularly return to, but all of it is accessible if I can find a path to follow down into the center of the spiral. When I recall text, picture or face to mind, it's just a case of whether I can bring that image into focus, and part of that is memory and part of that is pattern recognition.

Connection with animals

Little known neurodiverse trait, but most neurodiverse people get along with animals very well, frankly better than they do with neurotypical people. If everyone in the room is cooing over a baby, I'll probably be cooing over the dog. For some reason animals make sense to me and I make sense to them. It's allowed me to be a very talented horse rider, but also have my life enriched by masses of wild animals and birds who like my garden as a place to be. I've also had two cats for many years now, and they are very attuned to me and vice versa and frankly part of me, and somehow they always bring the sensory overload down, but more on that below.

Details

I am sensitive to all the details all of the time, and all my senses are off the charts. Every tiny movement, scent, sound, texture, spot of color or shape competes for my attention. On the downside I'm lacking all three filters that slow sensory information and have very acute sensory nerves and a brain that looks for everything, so ambient light and noise are a no-no, especially at night, and I do indeed sometimes practically run out of dark, crowded, noisy bars; but on the upside, I lack those three filters, so I get all this information. 

The good news is that I can smell those steaks that have just started to burn but are 100 yards away, round several corners outside of the house I'm in. I can see pollen on the wind, and spot whether a bird of prey is a red tailed hawk (my favorite) or a turkey vulture from miles away. I can see the tiny shifts in mood and faces in a meeting. I can hear a tiny change in background noise that suggests something is wrong.

The downside is that I max out on sensory information very quickly. A few years back I was celebrating Christmas with family and there was a little boy in the room who was about three and also neurodiverse, and eventually at one point when we'd been sat round the table for about three hours he threw a tantrum, screamed and put his hands over his ears. The funny thing is that as soon as he did so I realized I'd hit my point of "I've had enough" too. This concept of melt down, either due to sustained sensory overload, or something sudden, such as knocking your head on a shelf, is the main source of any acting out by neurodiverse people, but the need to hit out or scream etc lasts only a few minutes if the stimulus is taken away, and if it's not, you're never going to be in a position to actually sustain an attack on anyone because you're too busy dealing with the mental confusion, pain and nausea that comes with overload, you're most likely to curl up in a ball. The difference between me and the little boy is of course that I've had years of occupational therapy and experience to learn to squash that "melt down", and breathe, and try and consciously stem the flow of some of the sensory input and ultimately and go five or six times over that sense of maximum. The problem is that as I go through what's my "maximum," my brain is still overloading, I'm just not doing anything about it, and the upshot can be bad headaches, migraines, or at worst, days when I just can't speak or deal with people or, if I have the option, not leave my bedroom, which I've carefully ensured is a "white room" - all the usual tips and tricks, walls, furniture and bed linen is white, duvet is heavy and bed is ultra comfortable with memory foam, no ambient light or noise comes in through the windows.

I managed to rescue a deer recently in part because I dream differently, I am mentally active in my sleep, in part because I have a strong connection with animals and in part because of this sensitivity to sensory information.  I would rather be that person who in their sleep heard the difference between the waterfall on the pond, and an animal splashing in distress, and woke myself up - and was the kind of person who can move in a way that wild animal didn't think was threatening, would let me hold it, pull it around, lift it, feed it and dry it.  I'd rather be me than someone who wakes up to a dead yearling buck in the pond, or even worse, found it but couldn't help it.

The not so good bits - Social interaction and physical movement

Social interaction

Social interaction is bloody hard work, I don't avoid eye contact because it makes me feel uncomfortable, I avoid eye contact because it's hard work unless I feel I've known that person for a lifetime, either in practice or as one of those freaky people who turn up in your life from time to time who you just know. That said, the majority of people would never know I'm having to work at it. Partly that is because girls, particularly high functioning girls, present very differently to neurodiverse guys. I suspect that may have a lot to do with the fact that because women have five areas of the brain that control communication, 4 in old monkey brain close to the pituitary, where as men have only one, up in the right frontal cortex - talk about evolution's sense of humor.

Being neurodiverse means I didn't come out of the womb with the primer on social behavior that everyone else does, but it doesn't mean I don't like people or family, I'm still a "social animal" as the Dalai Lama puts it and I think that's the thing that the diagnostic criteria miss, most neurodiverse people do have some close relationships. But like most high functioning neurodiverse people, when I look at someone, I've got no instinctive idea what they mean to communicate unless they say it in words of one syllable. Instead, I have to watch for changes in their face and eyes, some big and some tiny, and preferably also body language, and match it to what I know of them or what I know that set of behaviors is known to mean. I am figuring out this stuff all the time and I've worked hard at it, read books, taken courses - I could be part of the "Lie to Me" team!  I'm better at this than I was ten years ago, I'm miles better than I was twenty years ago.

The worst part is that people give all sorts of stuff away on their face and half the time they don't mean to, so I have to figure out what they mean and what they don't actually mean for me to know. I want to appear normal, I want to interact with people, support them, care for them - but that means I have to figure out all the stuff they're using to communicate.  Over time I've got good enough at it that really only shrinks and special needs teachers can spot me going through this process, and I don't actually like being spotted, it makes me feel like someone has opened the top of my head, but then the over observance thing means I make other people feel like that from time to time. But this is why I like email and if I had to take a bet, I would say this is the bit that swallows the largest part of my IQ, and perhaps why those neurodiverse people with lower IQs struggle more with social interaction.

Where this bit becomes a big problem is when you get picked on and you know people have spotted you got something wrong. As a child, even as an adult, this can be incredibly frustrating, and if you haven't learnt to control meltdowns, can lead to a tantrum. But that's by no means the same as threatening to kill other people or yourself.

Physical movement

On the downside, being body-neurodiverse means that 70% of all my movement is consciously controlled, every single sport I love I have to work at, all of the time.  I have a bit of muscle memory, but not a lot.  Every time I go back to ski, I have to work through my lessons again.  Frankly I had to be taught to walk, and I still have to think about it and I will never ever be playing a sport that involves a ball, which frankly made sport until I was 16 an absolute misery.  Maybe this will make sense - I'm an amazing gymnast as long as I'm going forward, I've got medals for vault.  I also cracked several ribs as a child coming down on the damn beam, and got none of the progression awards, because I cannot go backwards, I cannot go where my eyes can't see and my brain can't correct for my body that will not do what it's told to do. 

En finis

So - there's the 2,500 word answer to what it's like to be neurodiverse, although the whole picture would take a great deal more words - and for those who are interested, I'll shortly post a whole bunch of high end research on neurodiversity and in particular polyvagal theory breathing/meditation for compensating for stressors and sensory overload.  To answer the obvious question, no, I don't take any pills for neurodiversity or mood, never have and I'd be very cautious to.  I've been prescribed an oxytocin nasal spray by a jackass doctor who isn't even in a field where they should be so prescribing frankly (was my last appointment!) who prescribed it simply because I mentioned I was autistic, and it's still sat on the shelf.  You see along with pattern recognition and serious recall abilities, my inherent lack of response to social cues and analytical ability make me professionally cynical - all great neurodiverse traits and all make me a better lawyer and frankly who I am and I'm quite content with who I am.

3. Thyroid Series - Supplements

So once you have thyroid issues, or frankly fybromyalgia or any other immune related issue - your body is never quite the same again, and you're always going to be asking a lot of your body, so great quality supplements are going to be part of your daily regime.  There's lots of detail on supplements in the material set out in the first post http://www.ems-nutrition.blogspot.com/2012/11/introduction-to-thyroid-series.html but the below are a hit list of things I've found have helped. 

However, while I'd encourage anyone to try these on a "take it for a month and see if you feel better" basis, the ideal would be that this is a discussion with your healthcare provider, particularly in the case of some of these, like B12, D3, Pregnenolone, 7-Keto DHEA etc, on the basis of blood tests.  My sense of humor failure with my first endocrinologist was in part because his response to my question on dose level of glutamine (a mainstream supplement in sports nutrition) was "that's a bit alternative".  Hence the earlier post http://www.ems-nutrition.blogspot.com/2012/12/thyroid-issues-getting-treatment.html

NOTE: IF you are on thyroid supplementation - you need at least a 3 hour gap before taking anything with iron or calicium

Multivit

So the trick with this is finding a multivit that absorbs well that has high quality ingredients.  I like Solgar, but I love Oxylent http://www.vitalah.com/ - the thing about Oxylent is that it's got a whole variety of things you need, in a form that should have a very high absorbtion rate. It also works well for dehydration and great at the end of the day. It looks expensive, but if you think about the number of bottles it's otherwise replacing, it isn't.

Energy/Mood/Brain function/Immune System

Vitamin D3 -  5,000 IU - from Cholecalciferol - Mood/Brain function/Skin & Bones/Immune system
Vitamin B12 - 5,000 IU - from methylcobalamin in a sublinqual form - Energy/Brain function
Co-Enzyme Q10 - 100 mg from Ubiquinol - Energy/Brain function
D-Ribose - 10 grams, easiest to just mix in a low -calorie sports drink - Energy/Muscle pain - http://www.ems-nutrition.blogspot.com/2012/04/hydration-made-easy.html
Omega 3.6.9 - 565 mg, 224 mg, 244 mg  - Natural triglyceride form - Joint pain/Skin & Hair/Immune system
7-Keto DHEA - 100 mg - Energy/Mood/Brain function & memory/Immune system http://www.ems-nutrition.blogspot.com/2010/03/7-keto-dhea-great-for-immune-function.html
Pregnenolone - 100 mg - Brain function & memory/Mood/Hormone balance
Glutamine - start on 5 grams a day and drop to 2 after 3 months - check for pharmaceutical quality - Muscle pain/Energy/Immune system http://www.ems-nutrition.blogspot.com/2006/08/first-rule-is-glutamine-is-good.html
SAMe - 400 mg from S-Adenosyl Methionine - Mood/Brain function/Joint pain

Auto immune/Energy issues/Adrenal Fatigue

Ashwaganda Root Extract - 250 mg
Coleus Forskohlii - 300 mg
Eleuthero (Siberian Ginseng) - 200 mg
Guggul Extract - 150 mg
L-Theanine - 100 mg
Skullcap Root extract - 250 mg
Rhodiola rosea Root Extract - 200 mg

I like AdreneVive from Ortho Molecular Products with the Coleus Forskohlii on its own - and push come to shove - Thyro RX and Adrenal-Calm from Holtraceuticals (rather more expensive)

Taken together
Selenium (as L-selenomethionine) - 200 mcg
Vitamin E (as D-alpha tocopheryl succinate) - 30 IU
Glutathione - 500 mg

Adrenal specific

Adrenal Concentrate (Bovine) - 220 mg
Licorice Root Extract

For this again I like Adren-all from Ortho Molecular Products.  There's a bit of overlap with AdreneVive but not enough to stop you taking both

2. Thyroid Series - Getting the Right Treatment

So one of the biggest challenges once you are pretty sure you have a thyroid problem, and/or you've got lab work to prove it, is finding a good doctor.  Understand that pre-T3 treatment, you're at your lowest ebb, and if you don't think you have the energy to thoroughly research your thyroid specialist, then enlist the help of friends and family. 

The care you need

More on this another day but the key things you need to know are (a) that for all forms of hypothyroidism T4 (synthroid/levothyroixine) only doesn't work, you need someone to prescribe T3 or Armor thyroid (b) most endocrinologists will be useless and (c) if you have Hashimotos, the best immune modulating drug out there is Low Dose Naltrexone, and you need someone who will prescribe it.

In short what you need is someone who is unfortunately going to be expensive, and almost definitely not in network (for the US) or with BUPA (in the UK).  Finding them however can be a real trick, and its worth the effort, because there is nothing more time consuming or expensive than a doctor who doesn't know what they're doing.

This has some very general advice on finding a doctor http://www.stopthethyroidmadness.com/how-to-find-a-good-doc/

How to pick a doctor

But your best bet is to start with http://www.thyroid-info.com/topdrs/index.htm 
If you're in California then see if you can get to a Holtorf clinic http://www.holtorfmed.com/
If you're near one of the Fibro & Fatigue clinics try them http://fibroandfatigue.com/

Then when you've short listed some doctors, phone up and ask (a) do they prescribe T3 and (b) if you have Hashimotos, do they prescribe Low Dose Naltrexone.  If they don't, scratch them off the list and move on.  You may end up having to fly/travel a long way for your care, but once you're a regular patient most doctors will allow you to do some appointments by phone.

I would recommend going in with labs to make sure the first appointment is as efficient as possible - if your primary care won't order the basic panel of FT3, FT4, TSH, RT3, thyroid antibodies, then you can order them directly. Ferritin, B12, D3, free and total cortisol, DHEA, Pregnelone, Serotonin, sex hormones and a basic CBC and metabolic panel are also helpful.

Try here for ordering your tests https://www.mymedlab.com/
STTM also has prearranged panels (see down the bottom of the page) http://www.stopthethyroidmadness.com/recommended-labwork/
Mary Shomon also has some panels you can order https://www.mymedlab.com/mary-shomon-profiles/shomon-thyroid-baseline-br-with-expert-review

Endocrinologists

I'm not totally against endocrinologists for thyroid problems, particularly the old school ones who started training or were trained by someone who predated the switch from treating with dessicated thyroid to T4 only.  I'm a great fan of the endocrinologist I saw in Colorado, who was the first person who prescribed T3 for me, who sympathized with what I was going through, and was interested - could describe to me how I probably got hashimotos without a family history (great for my sanity) and also had some theories on why I had always got better when up in the Colorado Rockies.

However, the majority of endocrinologists are arrogant, careless, and really trained to treat diabetes not thyroid issues.  The only thing diabetes and thyroid issues have in common is that they both relate to endocrine hormones.  In Type 1 diabetes the auto immune attack stops when you lose all the insulin producing cells in your pancreas, in Type 1 Hypothyroidism/Hashimotos, the immune attack never stops, will attack bones, cartilage etc as well as being triggered by your replacement thyroid meds - managing the auto immune piece of Hashimotos is key.  They also tend to be T4 only and they come out with complete nonsense - I heard of one describing T3 as being like speed - T3 would be a hormone your thyroid used to produce and your organs can convert T4 into, there is frankly no good argument for not supplementing with T3.  They also tend to be ovely focussed on TSH, when the key lab result is actually FT3.

Private Primary Care/GP

You're also probably going to need a concierge/private primary care/GP.  The issue being that once your thyroid levels are out of wack, you're likely to pick up knock on problems such as digestive disorders, clotting issues, migraine increases, and joint problems.  Once fully explored you'll probably find out this is down to your thyroid issues, but they'll need to be explored. You'll need someone who is responsive and will co-ordinate all this.