How a label changed my life

My friends know that 2017 was a landmark year in my life. I shed a great deal of my stress by selling one of our businesses and therefore no longer being responsible for the livelihoods of a dozen other people and their families.

Most of you don’t know the main reason I found managerial life intolerable is that I’m autistic.

I doubt it will be news to many friends that I’m neurodivergent, especially those who have known me since my childhood, but it may well surprise people that the label for my brand of weirdness is “autistic”. There are as many different kinds of autistic people as there are kinds of allistic (non-autistic) people.

When you’ve met one person with autism… you’ve met one person with autism.

Why I’m writing about this

Thanks to the proliferation of inaccurate information on the internet, what you think you know about autism is probably at least partially wrong. I want to help you find accurate information because it matters to the autistic people you meet, especially if they are in your family.

Given the prevalance of autism, it is highly likely that you know at least a few of us, although you may not know it… and, in fact, they may not either. Like I did, they might just be going through life struggling and feeling like an outsider without knowing why. Some of us manage to function in life fairly well because we have families who are just neurodivergent enough themselves to accept us as we are. Others may survive through reliance on alcohol or medication.

What autistic children really need

There is widespread exasperation among adult autists that autism awareness is usually about the parents and how much they struggle to help their child. The focus is rarely on why the autistic child herself struggles.

Parents of autistic children do, of course, need support and services. I am an autistic parent of an autistic child (and I asked her permission to reveal this because it’s not my story to tell). Many of us have to deal with some pretty challenging behaviour over the years. Yes, it can be exhausting. But this is missing the point: the world is challenging and exhausting for our autistic child! The real challenge facing parents is to figure out why their autistic child is behaving in ways that are so difficult for them to understand. Autistic people can help with this but nobody is listening!

As an autistic parent, I have a huge advantage here. Understanding the reason for autistic behaviour leads to perceiving it as a form of communication rather than misbehaviour that needs correcting. Even before I knew I was autistic, I usually understood what my (then) mostly non-verbal daughter was trying to tell me. The only times I feel I failed her were those times when I listened to the general parenting advice because, without a diagnosis, I sometimes didn’t know the best way to help her even though I knew what she was trying to tell me.

This is what needs to change and it requires the input of autistic adults who not only understand what their behaviours were trying to tell the people around them but who can also provide insight into how the therapy or support they received affected them in the long term. Not all therapy is good, even if it appears to have the desired effect at the time.

Telling the charlatans from the real deal

Today (2 April) is World Autism Acceptance Day. Throughout April you are likely to see a lot of posts about autism that are written about us but not by us. That’s like men writing about feminist issues (which is fine) but drowning out and invalidating the voices of women who write on the same subject (which is not fine).

Unfortunately, parents of autistic children are often unaware of how the organisations they respect and turn to for advice are misrepresenting their child and his or her future. That is why I’m writing this.

There are links at the bottom of this blog post if you want to skip my personal experience of autism.

Why having a label saved me

Being autistic is neither positive nor negative for me. It’s like being female. It’s just how I am and it has its pros and cons. However, the way others react to autistic behaviour can be deeply hurtful. When someone’s internal life is so much at odds with how they appear from the outside, it’s no surprise that their mental health suffers. In time, physical health deteriorates, too. It didn’t shock me to read that the suicide rate is far higher among autistic people than allistic. This is because we tend to have a poor view of ourselves. That’s because we are not usually accepted in our natural form. Girls and women, especially, often learn to mask their behaviour to avoid bullying.

Some people have asked why I want a label, since it doesn’t change anything. That’s true but I wanted a new label to replace the old ones, such as fussy, blunt, rude, inflexible, paranoid, selfish, heartless, inclined to overreact, hypochondriac, not good enough, unloveable. I prefer being autistic to being all those other negative words. I’ve felt different all my life; I just didn’t know what was different about me. Having a name for it has helped me forgive myself, value myself and start to ask for accommodations that make my life more comfortable rather than always trying to suppress my innate reactions to make other people comfortable.

I now understand that when I overreact, I am in fact reacting exactly in proportion to how much discomfort something brings me. I just happen to have a lower threshold of discomfort than most people in many ways.

For the most part, I have hidden my discomfort well enough that nobody knew I might have a disability – not even me. Which brings me to my final point: is autism a disability?

“But you must be very high functioning”

I first self-diagnosed in February 2017 (although was only professionally diagnosed that July) so it’s taken me over a year to reach the point where I’ve processed this news enough to be able to talk openly about it. This is not because I’m ashamed of it but because I have noticed online that many people have very negative views of autism or, at least, pity autistic people or parents of autistic children. And then there are those who may not believe me because I don’t fit their definition – I don’t look autistic enough for them –  or who disregard the relevance of my experience to the “low-functioning” autistic people in their life.  I needed to prepare myself to react to those views without becoming (too) upset or offensive.

There are different views on this, even among autistic people themselves, but I believe that autism is a disability, regardless of whether we appear to function well or not, primarily because the world is not set up to accommodate us, but not because there is anything innately faulty about us. We are different, not less. But what about non-verbal autistics or the ones that flap or rock in a corner? The kind who are so obviously autistic that they never struggled to be diagnosed? Those who need more support for getting through daily life? Surely they are less, not just different? And surely I’m nothing like them so I can’t speak to their experience?

It may surprise you to know that although I usually appear pretty normal when I’m in public, I sometimes look like the screeching, cowering child you’ve seen having a meltdown in the supermarket (I can sympathise – supermarkets are a sensory nightmare). When I become non-verbal, I am not choosing to avoid speech; I literally cannot speak. It feels as though there is duct tape over my mouth and it hurts to speak or make eye contact. This was the reason I first started writing. I would write to my mum when I couldn’t speak to her but needed to tell her something. When I rock myself, it is self-soothing and often goes along with being non-verbal when I am extremely stressed or upset. I have other, more subtle forms of self-soothing (“stims”) that you might have noticed, such as smoothing my upper lip with my thumb nail and picking or chewing at the skin on my thumbs.

Mild autism means you experience my autism mildly

For this reason among others, I detest the terms “low-functioning” and “high-functioning”. They serve only to minimise the challenges of those considered high-functioning while infantilising those considered low-functioning. In reality, our functioning level is fluid and changes not just over our lifetime but also from hour to hour.

I may have the power of speech most of the time, I may have a high IQ and I may have succeeded at having a relationship and bearing children but that doesn’t mean I am always high-functioning. I just happen to be invisible most of the time when I fall apart. When I feel a meltdown approaching, I run and hide. Only my closest family members have seen me in meltdown.

The meltdowns you witness in public are autistic people (usually children) who do not have control over the overwhelming situation they are in and cannot get away. If they are non-verbal, their parents may not yet realise what is overwhelming them in order to take avoiding action. Even if they are verbal, they may struggle to pinpoint what is overwhelming for them or may have difficulty expressing this verbally (I have struggled with this myself, despite being an articulate adult).

The psychiatric report containing my autism diagnosis states that although I have been successful in my careers and academically, this has occurred “with a great deal of effort and emotional cost”. That sums it up, really: I can be a chameleon (finally, an explanation for my long-standing love of chameleons) but it’s exhausting. I couldn’t do it without my husband.

My husband is the first person I’ve met as an adult who can cope with me in my raw form. He helps me to navigate life when I’m overwhelmed (something my mum did when I was younger). We make a good team: he’s dyslexic, so I help him with words, while he helps me with emotional regulation. Due to the lack of knowledge about dyslexia when he was growing up, he is also used to being considered less rather than different. We are our own, private, mutual supporters’ club.

I am no longer prepared to pretend to be normal. I never was and I never will be. (My husband has been telling me this for years!) Now I want to help make life easier for other autistic people.

Me showing my true colours
Copyright: K. Simpson 2018

Further reading/viewing

Why I call myself an “autistic person” not a “person with autism”

Why I won’t be “lighting it up blue for Autism Awareness”

Why you won’t see a puzzle piece on my Facebook page

How the label “low functioning” can damage an autistic child’s prospects

Lessons from the mother of a non-verbal autistic woman (essential reading if you have a non-verbal autistic child!)

A 9-year-old allistic girl talks about life with her autistic siblings

How to do autistic advocacy right

When you know you’re different

Accurate autism information

“Ask an Autistic” YouTube channel (covers many topics such as “What is stimming?”, “What shouldn’t I say to autistic people?” and “What are meltdowns?”)

NeuroTribes: The Legacy of Autism and How To Think Smarter About People Who Think Differently by Steve Silberman (extensively researched book)

Thinking Person’s Guide to Autism

ASAN – Autistic Self Advocacy Network

Emma’s Hope Book (blog by a non-verbal autistic woman, originally written by her mother until it became clear Emma could write for herself – see also Emma’s extensive list of blogs and websites under Resources including around 30 by non-verbal autists)

Musings of an Aspie (especially useful for late-diagnosed women)

Autistic Not Weird (Facebook page)

Sounds Allistic But OK (Facebook page)

Ask Me, I’m Autistic (Facebook page)

Mums on the Spectrum (Facebook page)

Michael McCreary – aspiecomic (Facebook page – so many laughs)

Number one site to avoid

Autism Speaks (usually known as Autism $peaks among autistic people… read why they are usually considered a hate group here)

There are numerous organisations across the world who support or do not condemn Autism Speaks. The allied organisations vary in their level of support for damaging policies. If in doubt, find out the ratio of autistic to allistic people on their board and staff. If the autistic people are in a definite minority, it’s likely they are pursuing damaging goals and you should regard their advice as questionable (although not all necessarily wrong, let’s be fair). Any truly inclusive organisation actively seeks out autistic voices and alters policy in line with their improved understanding.