Autism Self-Diagnosis: A Good Idea?
Self-diagnosis is never a good idea… were you going to let me get away with saying that?
That can’t possibly be true in every case.
‘Googling’ symptoms can be dangerous; image search seems to only bring up the most horrific puss-ridden images of swollen glands and WEDMD thinks you have cancer.
All the time.
And you should never treat it with anything other than a trip to the doctor…
Isn’t that the kind of advice like: ‘Just go down to A.E., to be sure’ – that is killing the NHS in England?
Sometimes, self-diagnosis might be a good idea. For example, with something as simple as a sniffle, use traditional remedies for a few days, assuming it’s a cold, then if it doesn’t go away…
Okay, I’m going to stop teaching Gran to suck eggs. You should know this. The ‘self-diagnosis is never a good idea…’ thing is just offering common sense to hypochondriacs, it really means if you’re the sort of person who goes from investigating a symptom to extreme paranoia in a matter of moments, you shouldn’t self-diagnose. You should go to the doctor.
For the rest, presumably, the majority of people, certain conditions are probably best diagnosed by you!
So, What About Autism?
The article ‘Autism Diagnosis is not Special Snowflake Syndrome’ explains why autism is one such condition. The simplest summary of this article can be seen on Google if you ask ‘why self-diagnosing autism is good’:
‘Because no one is a special snowflake. Special snowflake syndrome isn’t a thing. The root of self–diagnosis is a lack of good resources. A lot of people, particularly women and people of color, didn’t get diagnosed as children because autism was seen as a white, male disease.’
Luterman, S. (2017). Autism Self-Diagnosis is not Special Snowflake Syndrome.
Now, I don’t know what ‘special snowflake’ refers to? Sounds like some new pejorative term that means nothing until you use it to insult people who are different from you in a way that you find irritating, probably because in your eyes that very difference seems to make people treat them better than you think they should be treated? I don’t know, sounds lame.
The rest of the point is spot on. There are lots of reasons not to get diagnosed.
When I started school the work of Hans Asperger had only been published in English in the UK for around five years. No one but a true autism expert and trailblazer could have diagnosed me. I was check for ADHD but failed that because of my penchant for obsessively engaging with a specific, repetitive task when away from my peers, which in those days meant that my behaviour when trying to switch between a multitude of diverse tasks when around a ton of screaming kids was voluntary and therefore I should be bullied by children AND teachers for my entire time at school.
I self-diagnosed, sort of. My mother, after ten years working with autistic children, finally realised when I was twenty that I had Asperger’s syndrome.
Rather than tell me, she got me to watch some YouTube videos where people with Asperger’s syndrome discussed how it made them feel. It was this girl:
YouTube. (2017). Trusera.
Who made me realise that I am not an alien, a robot, insane or any of the other things I considered when growing up trying to figure out why I felt like I was the sole member of some strange species.
From that day on I sought to find out all I could about autism. I was already training to be a teacher, studying a three year course with strands in child development and special needs provision, so I had a huge range of sources to investigate and what is more I got to test my developing knowledge by writing essays about autism. The first I got a mark of 45% and I stormed into the course leaders office and tried to rant my way to what I considered a fairer score. This did not work.
By my third year I knew a lot more, both about the condition but also about how to write about something about which so little is definitively known. If you think you are an expert on autism that is fine but that can only really mean you are an incredibly experienced and reflective practitioner because almost nothing you can say about autism is a ‘fact’. I’d go as far as to say there are no true facts for autism because I’d go as far as to say we don’t know what it is.
But that doesn’t mean a diagnosis isn’t helpful. Even if autism is a misunderstood condition or range of conditions with overlapping symptoms, a diagnosis can mean the difference between surviving ‘the system’ or not.
Formal Diagnosis is Important:
I completed my degree, surviving my second and third years after my first year descended into the usual spiral of accidentally upsetting people, realising that those people didn’t like me, then intentionally upsetting people to the point of being ostracised, all the time resenting the way people seemed to treat me differently from the outset, giving me no chance to learn how to change. Once I knew other people went through this, after I had read a dozen books bouncing in my seat calling out to my mother ‘this is a description of me; this is so me; I can so relate to this; how have I never known other people feel this way?!” I didn’t feel so bad. I survived with a handful of friends who I told about my condition, which led to lots of interesting discussions where I got to discuss how I perceived people’s behaviour and how they perceived mine.
However, once in the working world, still with only a self-diagnosis, things changed.
I got a job at a special needs school teaching a class of autistic children. Early on, I told my mentor about my self-diagnosis and explained that sometimes my behaviour might seem strange, but that I wanted her to ask me about it and work with me to find a balance between functioning ‘normally’ and making the most of my ‘differences’ to benefit the school. It seemed right to me that someone with Asperger’s should teach a class of classically autistic children as symptomatically it can, in many cases and I like to think mine included, be a condition somewhere between neurotypical and autistic.
For example, I can present as quite charming in an interview sitting because I have learned the rules for that form of social interaction but in others, such as the McDonalds queuing system, there are no definable rules and therefore on the rare instances I enter McDonalds for a veggie burger, no mayo, I hop around, scowling through deep thought, responding to every beep, bleep and bling bling bling by jumping out of my skin whilst I try to figure out what everyone else is doing, so that to everyone else I must seem like some space invading drunk. Or maybe I don’t stand out at all. That’s anxiety, it can you feel ten times too big.
So to have someone that could learn all the rules for interacting as a teacher, and I swiftly mastered parents evenings, even phone calls home, and became beloved of my children, teaching assistants and parents.
My mentor even kept letting me think she agreed with me that being high-functioning autistic and working with autistic people was a great idea. She even offered to get the school’s behavioural psychologist to interview me and try to organise a formal diagnosis, something I had been fighting for since university.
Now, to the main point I want to make: SELF DIAGNOSIS FOR AUTISM IS A GOOD IDEA. NO ONE WANTS TO BE AUTISTIC, UNLESS THEY ARE REALLY MISERABLE BECAUSE OF A RANGE OF SYMPTOMS THAT MATCH UP WITH A LIST OF AUTISTIC TRAITS.
I highly doubt anyone who has read as many books as I have on autism and who had worked with autistic people in education for almost ten years, at every age from four to nineteen, thinks it is a fake condition. The way it is diagnosed is by looking at traits. It you have a ton of autistic traits and it is making you miserable, you deserve a diagnosis for autism, because you are autistic.
I met lots of people who disagreed with that, as a teacher, and eventually I had to quit teaching and take on a subsequent list of similar but reduced roles; I have been a teaching assistant, a nursery leader, a nursery practitioner, a play leader and a play practitioner. Due to anxiety, over the years I have gradually had to work less and less.
I believe if I had put my career on hold and FOUGHT for a diagnosis after finishing university, my life may have worked out different.
I was betrayed by a mentor who decided two terms into the year that actually it wasn’t okay for me to plan lessons on my own, even though my lesson plans were regularly ‘borrowed’ by other members of staff; it wasn’t okay for me to take notes with my head down in staff meetings then feedback my ideas through email, because no one else took notes so they didn’t know what I was talking about, because staff meetings weren’t professional, they were social, and that was my problem; it wasn’t okay for me to sit in the ‘chill out’ room where we sent children having aggressive outbursts, essentially a locked room with an open skylight, basically a form of torture for autistic people! I did it because I couldn’t believe it was humane and after five minutes I was blind and burning up under the intense light beaming directly through several layers of glass into a sealed, padded room. I complained, my complaint was responded to, then months later I was accused of ‘using’ the facilities, like some autistic creep just trying to get free sensory play by masquerading as a concerned teacher!
By my third term put on report, which I could not accept. The gist of the report was ‘you can’t act autistic and be a teacher at a special needs school, no matter how much you are liked by everyone other than the teachers’.
Here’s the thing, I was basically begged to stay on as a teaching assistant. And what is more, they didn’t want me to be class based, but to teach music to groups of children throughout the day, throughout the week, from every class from nursery to six form.
And I did it. Because I was a naïve idiot. I got paid like a TA to be music coordinator and teacher for a two-site special needs school providing for ages 4-19. I went mental. I had a full-on breakdown that ended with me ‘running away from home to live in the woods’.
In 2014 I lived in an eco-squat, where for one year I was truly happy living among wonderful freaks in a natural paradise but after a year I left, after becoming swallowed up by anxiety yet again, and I went back home to live with my Mother.
A month later received a call to tell me the referral autistic diagnosis I had applied for so many years ago, I can’t even tell you exactly when but it was sometime when I was teaching, so pre-2013, had finally gone through .
Talk about synchronicity! Within a month of coming back from the eco-squat, where I refused to answer my phone for most of the year, I received a call that finally lead to me being diagnosed in an afternoon following a bunch of questions that I had already come across and asked myself years beforehand when I self-diagnosed.
I am autistic, officially, and it’s no truer now than it was before I got diagnosed. To all the people who pulled dirt face and told me ‘you can’t self-diagnose’, you were wrong, yes I can, I did, I was right, you were wrong, you were wrong, you were wrong. Get stuffed.
Had I self-diagnosed younger and fought harder for a referral maybe I wouldn’t have felt pressured to quit teaching when people started making issues out of things that, for two whole terms, they considered charming quirks. Or so they claimed.
Had I had a diagnosis in the first place, maybe I’d still be working at Riverside School in Orpington, and maybe I could have helped prevent such insane idea as Headmaster Steve Solomon’s ‘autistic people shouldn’t be allowed to wear ear defenders’ or his de-facto imprisoning of children with four-limb athetoid cerebral palsy by putting nine of them in one class so it’s impossible for them to ever go on school trips because you try getting nine kids in wheelchairs on one minibus with four members of staff in time to go on a trip and get back before the end of the millennium!
Self-diagnosis is often the first step in formal diagnosis. It was the case with me; it will have been for thousands. Don’t let naysayers who don’t want to believe that anyone different from them is ‘special’ prevent you from fighting for the change you NEED to see in order to function happily in modern, western society. The worst thing that can happen is you get told no and then someone helps you to find out what is making your life so hard.
There’s no legit drug to treat autism and there’s really very little special treatment we receive, believe me, getting diagnosed has helped me to get on the social housing ladder, but in the UK if I were a woman I could get that simply by getting pregnant, and some people do do that to get on the housing ladder, so there’s no point attacking someone who is already miserable for trying to find a label that they feel justifies their perception of reality, whilst possibly opening up a massive support network, when they won’t benefit in any other really meaningful way.
Unless, you are a mother who thinks their child has special needs, and you ARE trying to get them special treatment in school.
In which case fight, fight, fight, fight , fight, never give up fighting, your child is special and if no one can see if you need to fight ten times harder. Ignore the naysayers. Get your kid the education they need and deserve. Once again, the worst case scenario if your kid isn’t autistic is that whatever if wrong with them, if you want to put it that way, is looked into.
Take it from me, this is my final advice, I’ve worked in schools since I was seventeen, I’m twenty-eight now, and I can tell you the less fuss a parent makes the less they get listened to. Make yourself a feature at your kid’s school; let the staff know if they mess with your kid they will have to face you. Otherwise, your kid might just get bullied by the staff. I still see it to this day, it still causes me to fall foul of my peers to this day, but that’s part of my autism. And I own it.
Luterman, S. (2017). Autism Self-Diagnosis is not Special Snowflake Syndrome. [online] NOS Magazine. Available at: http://nosmag.org/autism-self-diagnosis-is-not-special-snowflake-syndrome/ [Accessed 1 Dec. 2017].
YouTube. (2017). Trusera. [online] Available at: https://www.youtube.com/channel/UCV26P1e_RjXk_vp5uMNtsRw [Accessed 1 Dec. 2017]