Sunday, February 17, 2019

Age 41 diagnosed 6 weeks ago. From England (originally Midlands).

Biggest accomplishment - I must list more than one because there are different aspects...

1. Academically my PhD in Molecular & Cellular Biology, I got poor grades at A levels particularly in biology (A levels are the exams we take in England at age 18). I worked for 1 years before I went to uni to study biology; so, I was treated as a mature student with life experience when I applied to uni for my first degree. With my A level grades, I should never have got to such a good uni for my undergrad degree, let alone got an opportunity to do a PhD- but having struggled I was able to pick myself up and do well in my first degree and then do the PhD that I had never thought I would be able to.

2. I recently completed my MBA, which I did while working full time (I have a couple of other post grad degrees I did while working full time too). The MBA was exceptionally challenging, I got distinctions across multiple modules and the highest grade of the cohort in strategy - I'm very proud of this for many reasons, the course was the highest rated distance learning MBA in the world. Through the MBA I learned a lot about interacting and working with people that I can apply to the work place and social situations, it also really helped me learn to take a step back when faced by triggers for anxiety around things changing and lack of control. I'm lucky that as an adult and through science I have learned to analyze the world and see it as shades of grey shifting my views so coping with change (as a child this was hard, it can still be hard, but I have my mind maps and toolkits that enable me to navigate change).

3. My third achievement I want to share is completing the 2018 London marathon- the hottest in history. I'm not built for running and I have medical conditions that give me fatigue so this is a major physical achievement.

4. The fourth achievement is emotional, when my mum was dying of lung cancer being able to be with her, keep calm and support her and the rest of the family. I remember one week when the tumors had metastasized to her brain and she lost the ability to speak coherently, every 3rd word became a color. I stayed with her, spoke to her and my company seemed to keep her calm (other visitors either made her agitated or one relative couldn't manage to hold it together to be with her). So, this (And later writing a speech and then delivering that speech at her funeral) is Probably my greatest emotional achievement. I think all 4 of these achievements deserve a mention.

What do I wish neurotypicals know...
That we are first and foremost human beings who are equally deserving of respect, we have feelings & emotions like everyone else. If we are at a point where we are forced to be in discomfort or pain it is understandable that we will communicate to get people to stop. I'm lucky I'm hyperverbal so most of the time I can now say. As a child I was verbal, but I would have meltdowns...a lot. I would be reduced to tears at the slightest thing-it was a physical response to being overloaded, not as my dad used to say about getting attention or turning the taps on at will- I wanted to be left alone. Because I was a quiet well-behaved girl this wasn't picked up, so I went through my childhood and teens like this. For other autistic people, particularly nonverbal I believe the so called "behaviors" that are frowned upon are a response to discomfort and pain. So I would like non autistics to know that they should look beyond behavior and work on understanding what causes someone to behave in a way that says "stop doing that to me" and modify that (is there noise, food texture, clothing, other sensory issues, physical intrusion from other people) and change that not try to train an autist to tolerate discomfort and be compliant.
That autism is not some horrible illness, neither is it the result of brain damage from vaccines (I have relatives in previous generations who I'm certain were autistic-I it just wasn't recognized).

Really important- that we don't suffer from autism. I'll say that again- WE DON'T SUFFER FROM AUTISM. We suffer because of things others do, others force us to do, putting effort into masking & damaging our mental health to comply with others. We suffer when we are asked not to be ourselves (not stim or move to have quiet hands etc.). Unfortunately, this language isn't challenged enough by organizations that say they have a voice for us, but there is good literature about this when it comes to dementia and a range of medical conditions- and autism isn't a medical condition either.

I also want neurotypical people to know that autistic people are as different from one another as non-autistic people; consider President trump next to mother Theresa as "typical" examples of neurotypicals- autistics can be as similar as these two.

I also want neurotypicals to know that nonverbal, or any other trait does not equate to intelligence and that autistic people seem to learn at different rates- sometimes slower, some times faster, sometimes we learn then take a break and seem to regress while we focus on something else, then come back to it, so please challenge your preconceptions and stereotyped views of autistic people and disability. Enjoy our company and give us space - once you become our friend and get used to our "weird" you will have a friend who will fight tooth and nail for you and speak with you with a candidity rarely shared by neurotypicals; we are generally honest, open and highly values driven.

I was diagnosed at age 41 so have had no interventions. However, as a child I was trained to behave in certain ways and punished if I strayed. My brother said, "all the fight was beaten out of us by the time we started school" and from what I've read I think much of our dad's approach to our upbringing mirrored ABA.

This has impacted my mental health; being punished for being a fussy eater. Certain foods are like chewing grit (boiled & mashed potato), I can't take the acid, texture or after taste of any drink that has been carbonated (even if it has gone flat), fish is chewy like cardboard and the texture induces vomiting (forcing me to eat it ABA style has led to a lifelong aversion). I can't cope with nuts or offal (texture and flavor are bad, same with pate- again closest I can describe is grit). My parents had aversions, but we're in control so I was fussy, not them. I've always liked vegetables, as a child butter was too rich so I had spread or margarine (I can eat butter now), I gave up milk by age of 3 (it sticks at the back of my throat, cereal is dry I can have a small amount in porridge so long as I can't taste it) the list goes on and it's not just food that elicits a response. The good news is that as I've aged, I've tried new foods and broadened my diet, I've just needed to do it on my own terms.

I was labelled neurotic as a kid- my teacher blamed my mum for me being "neurotic" (this was popular psychology language in the 1970s) and again I was subjected to things that would trigger a melt down and punished for it (I believe again in an ABA style of training).

I have had mental health issues all my life- not because I'm autistic but because of what I have been exposed to and how I have been treated and raised in an analogous way to ABA training- this led me to try to hang myself at age 7 (fortunately it was a very feeble attempt that only a 7 year old can try so it failed). I would be any one reading this to think twice before attempting behavioral modification and look at triggers for behavior and change what is triggering rather than try to change the autistic person- you will enable them to live longer.

I think diagnosis would have made a huge difference to accommodations made for me during exams and other assignments for all my degrees. As a student having notes of any PowerPoints or diagrams, rather than having to draw them myself, makes a massive difference as I can annotate onto them and analyze as I'm learning.

At interviews taking pen and paper is really useful for me to map out and manage my tangential speech (actually it's not a tangent- it's me marking the complex connections through pattern recognition that non autistics struggle - yup there are advantages to being autistic, it's hard to believe some times as our strengths are written with negativity by non-autistic people who dominate the public narratives (if we used the same terminology and mirror it for non-autistics we would be viewed as spreading hate speech).

For fellow autistics I want you all to know You are uniquely gifted, let those gifts shine.

I've spent 41 years not being confirmed and hiding myself in plain sight; I expect that I will spend the rest of my life working out who I am.

The hardest thing is to be honest with yourself, once you are honest with yourself it's easier to start sharing with others.

Think carefully about who you disclose to and when you disclose.

I have found that autistic people tend to take feedback critically and analyze it. I've found that non-autistic people can find this difficult and view it as a personal attack, even when it is completely objective and has balanced positive feedback, similarly non-autistics have tendency to avoid anything that could be critical. If like me, you find this frustrating and require more direct feedback it's ok to tell someone this. And when it comes to feeding back to non-autistic people it's worth bearing in mind that they can be as hypersensitive to verbal feedback that suggests something be improved as we can be to physical stimuli of different sorts, so while I would advocate removing the mask where possible it's also important to reflect and understand the difficulties neurotypicals have with candid and direct communication.

My final thoughts; although I have come across a lot of rhetoric saying autism results in communication deficits, neurotypicals aren't that wonderful at communication; there are thousands of research papers and books written about how to communicate providing a wide range of models. If neurotypicals were good at communicating there wouldn't be a market for these. So, if you like working with neurotypicals and spending time with them, or must for any reason, I would recommend reading some of these books.

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