Autism/Neurodiverse resources

So, a quick look at the stats for the blog have shown that the autistic related stuff is getting a lot of interest.  It's funny, its never been something that I've devoted a lot of time to but maybe I should be. 

I think perhaps one of the hardest things as a parent of an autistic child is to imagine what future that child will have, and I can promise you I have come a long way.  As a child under 9 pre-diagnosis I was a mess, walked late, massive leg, hip and abdominal problems, massive gross and fine motor control problems (eggs got crushed, glass milk bottles got dropped), rages when criticised, reading and maths age 10 years ahead, writing age 5 years behind, super huge social problems, tended to have one close friend and struggled to make new ones, struggled to understand any group social interaction, always "different".  I don't want to say my life is hunkydory now, but most people would never spot that I was neurodiverse, I've got a wide group of friends, both long term close friends and social friends, I run a networking group of over 1,000 people from Ivy league US graduate programs, I make six figures, I live in a lovely house with an acre of garden - and I wouldn't change much in my life.  All of the sensory and social issue stuff I write about is a continuous progress - I'm better now in my 30's than I was in my 20's, and goodness were my teenage years disinctly unhappy. It gets better.  But I've got to caveat that with the fact that half the reason I think I've got as far as I have is that I start with a very high raw IQ, that comes down to a high functional IQ, even though it comes down by 40 points.  If I was starting at say even 120 that would be a different story.  But the biggest thing I think is a willingness to get up and fight, to prove people wrong, to walk the path you want to even if that's the one heading up and over the mountain.

So these are the various books and tactics that I've found helpful, and I'll post another day on the research that's looking pretty cool:

Books

Aspergirls: Empowering Females With Asperger Syndrome by Rudy Simone (May 15, 2010)
Caged In Chaos: A Dyspraxic Guide To Breaking Free by Victoria Biggs (Apr 30, 2005)
The Polyvagal Theory: Neurophysiological Foundations of Emotions, Attachment, Communication, and Self-regulation (Norton Series on Interpersonal Neurobiology)  Stephen W. Porges
From the Sandbox to the Corner Office: Lessons Learned on the Journey to the Top Eve Tahmincioglu (slightly random but it has a chapter "Adversity: Overcoming, the only option" about people with disabilities - none have neurodiversity although there's one with ADD and one with bipolar disorder, but the advice would apply well to anyone facing challenges at school and work.

Left field ideas

So this is a little different but these things appeal to the hyper observant and pattern recognizer in me and make sense to my funny little brain - I don't religiously believe these things but its a different frame of reference to consider:

 

The Illustrated I Ching; R.L. Wing

The I Ching Workbook; R.L. Wing

Animal-Speak: TheSpiritual & Magical Powers of Creatures Great & Small; Ted Andrews

Finding Sanctuary in Nature: Simple Ceremonies in the NativeAmerican Tradition for Healing Yourself and Others; Jim PathFinder Ewing 

 

Tactics

 

1. Live somewhere with as little ambient light and noise as possible. If you can't, invest in things that help, so black out curtains, sound proofing and double glazing if you can etc etc.

2. As with allergies so with neurodiversity - your bedroom should be your refuge. Generally speaking - white is the most resful.  Cotton or linen bedlinen and hypoallergenic bedding (cheaper than down, yey!) the least likely to irritate. Pick a heavy quilt or duvet and heavy cotton blankets for the summer - light bedlinen will give too much sensory information. Invest in a good mattress (Ikea does very good pretty cheap ones) and a memory foam topper. Keep clutter to a minimum.  Have blackout curtains if ambient light will come through the windows at night.  Use naps when you can - better to be rested than ratty.  Generally speaking, live in rooms that are all of one color - or neutral colors - with not many pictures or photos is easier. Less sensory information means more focus on the job at hand.

3. Have a pet, particularly one that's hugable.  Most neurodiverse people get along better with animals than humans, and find them restorative, restful and calming.   Try out riding horses.

 

4. Pick all clothes on the basis of least irritation and cut the labels out.  You can achieve this and still be fashionable.

 

5. Keep as far away as you can from any cheap synthetic scents.  Some synthetic scents are very sophisticated - most are going to give you a headache.

6. Pick a career where your neurodiverse traits are at a premium - pattern recognition and recall are powerful tools in things like programming, banking, consulting, law and medicine.

7. Try your best but go easy on yourself, pushing yourself to socialise when you're over tired is going to be counterproductive. If you don't like the environment, or you've reached a comfortable limit, make polite excuses and leave.  I have been known to turn up to a crowded bar, realize at exactly that point that its going to be too much and just turn around and go home. I try to be more organized than that but sometimes retreat is the victory.

8. Tell all doctors that you are neurodiverse and prone to sensory overload.  You'll get a few crappy suggestions as a result (I think oxytocin nasal sprays are diabolical but I can see that it might work for some people), but they're likely to be a little more patient with procedures that might overwhelm you, and a little more understanding of point blank refusals to try drugs such those that have an opiate or prosac like effect, that will make you feel "altered" and uncomfortable.

9. Accept that most friends, particularly neurotypical friends, are, forgive me, but basically weird.  They behave in illogical ways that are hard to relate to.  Give them room to be  - if they drift away let them - always be welcoming.  I really don't have the answers here though, there are still behaviors that puzzle the hell out of me and I often don't know what the right thing to do is and that's incredibly frustrating, but part of dealing with neurotypical people and even neurodiverse, I think, is accepting that they're not binary or logical and there probably isn't a "right answer".  You can just do the best you can to be a kindly person.

10. Do cognitive behavioral therapy with an extremely smart shrink who can spot when you've bored and telling a story rather than trying.  Preferably pick a psychiatrist not a psychologist (good explanation as to the why here). Understanding the roots of your own emotions and behaviors, learning to understand other peoples is always going to be a powerful tool.  There's a nice little web tool here and this is a great book called "Mind over Mood" to get started.

11. Learn about polyvagal breathing therapy and perhaps try it - you'll need to get your primary care/GP to find someone with the biofeedback programs and training  - to me the theory has been more powerful than the practice - but 20 minutes meditation's never a bad thing. 

12. Choose who you want to be.  If you still find social stuff hard, think about the people you most respect and weave in the behaviors you like into your life.  Sometimes copycat is easier than figuring it out.

13. At least initially make sure you at least apply for all available dispensations in exams.  When I was a child in the UK that just meant extra time, which isn't that much help, but the possibility to write exams on a computer for example would have changed my world.  However, you may find that there is a point in your life where the stigma of getting dispensation is not worth the benefit.  I took a gamble, admittedly to prove a point, when I was 21 and gave up my dispensation for my first masters exam.  I actually do better surrounded by my friends and under greater pressure.  But also there's no one I currently work with who has ever seem me get dispensation.  Sometimes it is a benefit, however crass and unfair, to appear normal.

14. Never ever give up and never ever accept that there's something you can't do.  That doesn't mean hucking your butt off a mountain chute if you don't have the skill to ski down, for example, its more a general approach to the problem, and life will present plenty of problems.  As soon as you give in, life will get harder and it's pretty hard already.

A neurodiverse girl walks into a bar. . .

So, sat in a bar on Friday night with a very patient mainly neurotypical friend, I asked a question about something that bugs me, particularly recently, which is "why do neurotypical people, knowing there's a problem, prefer to do nothing"? My friend's response was that "Inertia is easy. Doing nothing, doing what's normal is comfortable. Action is hard." To which my response is basically, that's weird, and also so bad for the individual - but as my friend rightly pointed out, good for the group, and fits in with the evolutionary theory of neurodiverse types as sentinels for the group. 

It of course occured to me of course that some of my "get stuff done now" stuff is learned behavior/personality type (rather alpha I'm afraid), but the need to see the pattern and do something about it now is also very neurodiverse. It also occured to me that some of this might be that neurodiverse people are never comfortable in the way neurotypical people are. 

My friend was sat in the bar in a happy fuzz, having a nice drink with a friend, barely aware of the paint color. Me on the other hand, the paint's maroon, floor pine, lighting wide spectrum hallogen spot (most likely the cause of this morning's migraine), the smell of food and perfume wafts, the aftershave of the man behind me assaults (ugg, can't wait until this trend for 20 something men to use aftershave like its air freshener is over). I catch fragments of 6 or more conversations and the human behavior so inexplicable on a micro scale on a macro is easily predictable, that pattern recognizing itch in my brain is resolving the room into groups of friends, enemies, those going home together and I have to get hold of my brain and go "SHUT UP. No really, shut up and focus." 

What is effortless in the morning, on a Friday evening is brutally hard work, I have to shut all this sensory stuff out, focus on the high bar chair I'm sat on, the glass of wine and food in front of me, to not fall or knock anything flying. To make eye contact, which I find hard for a bunch of reasons (so many it'll have to be the topic of another post), to remember to smile and make a miriad of small social behaviors which make little sense to me. To figure out what the hell my friend of several years means this time with that facial expression combined with that gesture, and what I'm supposed to do in response (I need to have known someone for 5+ years before I've got enough variety of information in the "database" to start predicting/recalling rather than analysing behavior). And if I can spare some brain cells, to come up with another topic of conversation. 

This is why neurodiversity, marvellous as it is, takes 40 points off my raw IQ, and how ignoring the details for a neurodiverse people, never mind what they mean is always an effort. Neurotypical, I tell you, its some crazy stuff ;o)