Tuesday, 26 June 2018

Life Brings Surprises: Self-Diagnosing as On the Spectrum

I was not sure if this post would ever get shared.  I was not sure if it was going to come out coherently or if there would be any benefit to sharing it. Will I regret sharing it?  I suppose it can always be deleted. 

Summary:  What if all your life you knew you were a bit odd, were struggling, could not fit in but nobody else was really noticing this.  What if you worried that you had some sort of mental illness where you imagined you were a freak because you imagine you are odd when you are not?  What if you worry you are neurotic so you Google it endlessly only to be reassured the traits of neuroticism are not yours only to panic again a week later worrying that they are?  What if you live with the constant anxiety and stress of knowing something is off but you don't know what and if you are crazy for thinking so when others say 'Don't be silly, you are just you and I love you the way you are?'  What if you know you are hiding many things and hiding them makes you safe but also means that nobody knows how 'weird' you really are so they aren't going to believe you when you say something is wrong?

What if one day someone suggests that you might be on the Autism Spectrum so you obsessively research it for almost every waking moment over a course of several days and you discover that you are?

This is called self-diagnosis and whether or not your self-diagnosis is accepted by others is pretty much a matter of who those other people are.  There are many myths and misconceptions about what it is to be on the Autism Spectrum so certainly there will be people who assume that if you are not Rain Man you are not Autistic.  Some don't know that the term Aspergers is no longer used and that this diagnosis has been absorbed into the Autism Spectrum Disorder ( ASD ) terminology.  Some are diagnosed themselves and resent others who are self-diagnosed for various personal and emotional reasons.

Diagnosis of adults and of females is rare and the traits many people know as Autistic are male traits and also often childhood traits.  An Autistic person can learn to mask certain features and studies show that females in particular are good at this.   Increasingly there are adult women being diagnosed as professionals are learning how to diagnose adults and particularly females but in many parts of the world access to a diagnosis is almost impossible and even if available costs money.

For some people, myself included, the time, expense and difficulty required to get a diagnosis isn't worth it.  I don't need funding or support so I don't need an official diagnosis.  I need to understand myself and I need those closest to me to understand.  I need to feel okay, even good, about who I am and to let go of hiding and masking some of that.   As I figure out who I will tell and how I will tell, I am considering what the consequences will be.  Not being believed will be very upsetting.  It seems logical to me that I don't really need to tell very many people.  It's not a matter of 'Hi, nice to meet you, I am autistic.' even though something about that seems rather efficient and practical to me.

For me, understanding this about myself comes as largely a feeling of relief.  Everything makes sense now and I have words to better describe my experiences. My desire to be understood is enormous, in a way most people in my life don't really understand, but I make do with being accepted and loved.  People think that it's fine to say they accept me as I am which essentially means 'despite your quirks' but would you say to someone with quadriplegia that you accept or love them despite their limitations?  It seems somewhat unacceptable to do so.

Of course, I have spent my life working very hard to mask many or most of my ASD traits.  In some ways I might wish that I hadn't.  Eventually you realise that you aren't masking everything, which leaves a few things that are seen, things which leave you open to being judged as weird, annoying or unskilled in some ways.  When people tell me they love or accept me as I am, I tend to hear that they accept me despite the ways I am unappealing.

If I tell people I am a self-diagnosed autistic I am sure to encounter doubt, skepticism and possibly even hostility from 'officially' diagnosed people on the spectrum.   I have read many stories of those who are even officially diagnosed being told they cannot be on the spectrum because of X or Y trait or ability being either present or missing.  Self diagnosis can be highly accurate though probably both a combination of luck and diligence.  Of course it can also be wrong.  I know how much I have researched, the degree of credibility of the various sources I have looked at, what all my own personal characteristics are and the reasons for many of my behaviours.  I also know that many types of diagnoses don't actually come with a blood test or brain scan, but rather are a conclusion drawn based on extensive collection of data either self-reported or reported by those close to the person being diagnosed.

As an elementary school teacher I have filled out countless forms of behaviour description for students being assessed.

I am aware of various traits potentially belonging to other diagnoses and how to rule them out.  Even professionals make mistaken diagnoses and females are frequently misdiagnosed before finally getting an autism spectrum diagnosis.  Being someone who obsesses over a topic and researches endlessly, questions and re-examines constantly, I know just how thoroughly I have investigated something and the level of knowledge I have.  Other people do not know this.

If you are trying to self-diagnose for something do your research thoroughly and pay attention to the credibility of the sources.  The most obvious red flag is someone selling something they claim is a cure.  Look for medical journal articles, university department articles and to some degree the documented experiences of others with a diagnosis.  Ask yourself why you want a certain diagnosis.  Does it seem to be the best fit truly?  Does it explain things so that now it all makes sense?  Get an official diagnosis if at all possible and if it can assist you in life. 

Some significant points:

If you have met one person with autism, you have met one person with autism. I am not sure who first said this but it's quoted all over the internet.

I hesitate to use illness analogies, but we don't assume that everyone with the same illness presents in exactly the same way.  The medical model is often male and it has taken far too long to discover that females present differently in many situations.  

If you think being on the spectrum or having Aspergers is just being smart, a little quirky and having poor social skills you might wrongly diagnose yourself.    While many on the spectrum choose to be proud of who they are and embrace their differences which is generally a good thing, being on the spectrum is not an easy thing.  It comes with difficulty and discomfort to put it mildly. Having spent most of my life trying to blend in or trying to be bold and confident enough not to care when I didn't, I know that accusing me of wanting to be a special snowflake couldn't be a more inaccurate accusation.

Everyone is quirky and different.  This is true to some extent.  The difference is whether or not your quirks cause you problems.  Just because you are unaware of or cannot see someone else's difficulties does not mean they are not there and that they can be easily dismissed with the statement 'oh everybody is different'.  Rather, the approach should be to recognise that being human happens in a variety of forms.

Websites that may be of interest to females on the spectrum:

Everyday Aspie

Tania Marshall


  1. As one person with autism I say...welcome to the family! I'm so pleased you have found some answers. When and how to disclose is one of the trickiest dances, especially as you struggle to read the social situation anyway!
    We probably blurt more than people are comfortable, but what about our comfort?
    I'll stop before I get on my high horse.
    Welcome my dear, I am lucky to have you as a friend.
    xo Jazzy Jack

    1. I am starting with the entire world, by putting it on my blog and then just going with a few other people. LOL.
      Thank you for your friendship. You are pretty damn amazing and I am grateful. xo

  2. It is true that often women are not diagnosed with Autism until late and sometimes never. I think it has to do with biological and psychological differences between the genders. As women we are expected and possibly also biological programmed to perform and take on more social roles. The doctors rarely considered this when diagnosing, but it seems that things are changing. Do what is right for you. There is nothing wrong with self-diagnosing.

    1. Thanks for you supportive comment, Ivana. Yes, they call it the female protective factor and in general at least amongst those with high functioning ASD there is likely to be a better ability to adapt, mimic and cope with social aspects. I think there is definitely a gender-bias cultural thing too where anti-social behaviour from little boys is accepted more than in little girls from an early age. Girls are also likely to be verbally precocious which was not known to be a sign of ASD until recently. Anyhow, it is helpful to have a better understanding of myself even at this late stage. :-)


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