Why I decided to talk about my autism diagnosis

I’ve been diagnosed as being on the autistic spectrum for two years now.

I was diagnosed because I wanted to talk about being autistic. I wanted to minimise being told in return that I’m not autistic, and although I already knew I am on the spectrum, I needed an official diagnosis to add authenticity.

Why did I feel it was so important to talk about it?

Hold up your hand if you’ve ever heard a parent talk about an autistic child.

Hold up your hand if you’ve ever heard a woman talk about her husband having autistic traits.

Hands up if you’ve ever heard a variation of the saying “all men are on the spectrum”.

Hands up if you’ve ever heard an adult say something like this about a child: “they thought there might be something wrong, they tested him for autism, but he was ok”.

Hands up if you’ve ever heard someone say “they are a bit autistic”, and mean it scathingly. Or if you’ve ever seen a meme mocking an autistic child on social media.

Or, on hearing a child is autistic, “oh, I thought there was something wrong”.

Now, put up your hand if you have ever heard an adult in your life identify themselves in conversation as autistic.

Put up your hand again if that person was a woman.

See where I’m going?

I used to work with autistic young people, as a teaching assistant, in a mainstream secondary school and then in a specialist college for people with identified special needs.

This was before I knew that I’m autistic.

Honestly, I didn’t really understand what autism is at all (I’m still not 100% sure, and I’m not convinced anyone else is either). I had a vague idea it was something shameful and “wrong”, but I didn’t really know how. I didn’t know what my students needed, and I didn’t know how to support them. I hate this, I wish I was alone in this, but I have come across this same story a lot from people who work with autistic children and then go on to have autistic children or realise they are autistic themselves. “I didn’t know what I was doing”, people say. “I regret the things I did.” I know I regret the things I did, my own lack of interest, and I wish I could go back and change it.

I looked up Asperger’s and autism before I realised I’m on the spectrum. I read about it for work, and I read about it for my own mental health research – because I knew my borderline personality disorder diagnosis wasn’t the whole story about me. I never in that time recognised autism in myself.

I didn’t recognise it in me until I was 30, and I googled “Asperger’s in women”. And then I was like, ohhhhhh.

Why would researching a condition NOT tell me I had it?

Why would adding “in women” tell me I had it?

Because the baseline for autism is male. It is a condition that was created after studying – overwhelmingly – male children. That male baseline is being expanded as we realise what it might look like in women – but we are still expanding a male condition. We are still looking at girls who appear close to the male-defined definition of autism.

Children identified with special needs are overwhelmingly male – around twice as many boys as girls are diagnosed with special needs. Women are presently thought to account for around 1/4-1/5 of autistic people. Men are around three times more likely to be diagnosed with ADHD; ADHD and autism are often diagnosed in childhood; and boys are likely to receive these diagnoses at an earlier age than girls are.

I was diagnosed with borderline personality disorder (BPD) instead of autism. That’s what the psychiatrist I saw recognised in me. No professional ever saw autism in me before I recognised it in myself.

BPD is typically diagnosed in adulthood (I was 24), and 3/4 of BPD diagnoses are to women. I was diagnosed with BPD after the fact – retrospectively. By the time i was diagnosed, I no longer fit the diagnostic criteria, but I had previously, in my late teens and very early twenties. I was diagnosed with it because the psychiatrist wasn’t aware of any diagnoses that might actually fit me, as I was at that time. And to be perfectly honest, he didn’t seem particularly interested. It took 2x 20 minute appointments to be diagnosed with BPD.

I also had had an eating disorder along with the BPD symptoms… Almost 9/10 eating disorder diagnoses are given to women.

As things currently stand, special needs diagnoses have many stigmas and potential pitfalls… but at their heart, what does a special needs diagnosis aim to do? It implies, this person has a right to be here, just as they are, and they are in need of protection.

Why do parents seek special needs diagnoses for their children? To protect them.

What does a personality disorder (PD) diagnosis imply? This person is damaged. Their personality is faulty. This person needs to be contained, and can possibly get back to normal if they try hard enough. This person cannot be trusted. That was what I felt with my BPD diagnosis.

I was referred to a non-residential PD unit shortly after diagnosis, and they told me I couldn’t do their treatment programme and get married at the same time. They made that decision for me, even though stability is known to be helpful to people diagnosed with BPD. (I left the unit, and I got married.) The place was very despondent feeling. Nobody seemed to have any hope of improving.

Seven years later I found myself with an Asperger’s diagnosis. I had only met one autistic adult male at that time that I was aware of, and no openly autistic adult females.

I didn’t even know that autism could really be a thing in women before it applied to me. The day after I realised it fit me, I looked for Facebook support for women on the spectrum, and I was blown away by how many groups I came across – large groups. And in the almost 3 years since that moment, I have seen those groups grow and grow.

What I found was a very secretive community. Only a minority of women I came across had diagnoses. Even fewer shared them with anybody beyond immediate loved ones. Some didn’t tell anybody in their “real” lives. Some will use a fake name to talk about their autism online, so that nobody can trace autism back to their real identity – I did, for a while. Most had realised after having a child diagnosed, often several years later.

Many women who go for diagnosis are refused one, so having a diagnosis can become a badge of honour. I know I feel proud of my diagnosis. Most of the diagnosed women had diagnosed themselves first, and then approached the medical profession. Most had other diagnoses assigned to them first – mental illness diagnoses.

Why are women often reluctant to talk about their autism?

For many diverse reasons. These are some of the things we might be afraid of:

Because we are afraid for our jobs.

Because we are afraid our children will be taken away from us.

Because we are already in social services with our special needs children and are afraid of being any more visible to the people who have the power to take our children away.

Because we are gay, disabled, or otherwise stigmatised already, and that’s enough to contend with.

Maybe we are single parents and have to support our children, and we can’t risk a diagnosis jeopardising that.

Because we are afraid of rejection from our communities. From our churches. From our neighbours.

Because we are afraid to be seen to be less than. That’s the one with the biggest hold on me.

These are all life stories I’ve heard in autistic women’s groups – sometimes, over and over again.

There are so many reasons we don’t share our identities, and they are not empty reasons. People don’t share because these things we are afraid of do indeed happen – and they happen because of the narrative we have around autism. Because of the memes, because of the hushed talking, because of the way we label men we find difficult with it.

Often as autistic women we have experienced rejection our whole lives, before learning of our autism. I am afraid, because the burden falls to me – not my husband – to socialise my children, and I don’t want to alienate them through the things I share about myself. I am afraid, because at some point I want to find work. I am afraid, because I experienced rejection all my life, until I met my husband and he was like, ok I see you and you’re ok. I have striven so hard to hide myself away, even for several years wearing a completely different personality. When you’ve tried that hard to hide, being visible is really bloody scary.

I have had people ask me not to share my diagnosis.

I do it anyway.

I do it because my position is relatively stable. My husband knows who I am and he supports me. I don’t work at the moment, I am at home with our kids, and we survive on his income – so if I did render myself unemployable through the things I share, we know we survive as we are.

It scares the hell out of me to be openly autistic. I have intrusive thoughts about it, of all the awful things that might happen to me. I have these thoughts, I believe, partly because of the ways I’ve felt rejected, historically.

I do it because I think it’s really bloody important.

I do it because of the way autism is “other-ised” – as in, you only hear people talking about other people having it. It’s outside. Not inside.

I do it because I look at small boys growing up. They are more often encouraged to be themselves, to inhabit space, to be boisterous. We diagnose them with “special needs” when they don’t easily fit into a classroom. When they become adults, women say to each other “they’re on the spectrum” – with the implication, they can’t change. They are as they are.

And then I look at girls. The ways we tell them to be small, physically. To be quiet. We are proud because they follow the rules and “do well” at school. We don’t diagnose them easily. And then they become adults. And they are diagnosed with “mental illnesses” – with BPD, with eating disorders.

Boys who can be diagnosed with autism or ADHD are often easy to spot, they are often loud, or visibly stand out in other ways. They may be obviously interested in learning, and they may easily share their interests, with pride even.

Girls who can be diagnosed with autism are different, we are often quiet. Easy to overlook. Well behaved, particularly at school. We less often speak up about our interests, we less often appear interested in learning. It’s not good, you see, to be too “clever” or too “different” and a girl – you want to catch a man, don’t you? Hide who you are.

Being diagnosed with autism was the best thing that ever happened to me, bar meeting my husband and having our amazing children. My diagnosis tells me, it’s ok for you to take up space. It’s ok for you to be different. There is nothing wrong with you. You were like this all along. You were made this way.

I’m a Christian, and I really feel strongly that I was intended to be the way I am, and that my faith calls me to help others. It is important for me to be open about my diagnosis to make it easier for others to be open about theirs, so nobody has to hide who they are out of fear. So that other people can realise they are autistic, because they see in me what feminine autism can look like. I have so many autistic friends, and I want it to be as easy to say “I am autistic, and this is what I need” as it now is to say “I am left handed, and I need to write with my left hand” (which after all, we once sought to change). I wish to inspire other women to recognise their autism, in the hope that those who can might share about it too – and then that those who currently can’t, will soon be able to, as the stigma reduces.

At the risk of sounding like a totally self-righteous bore, I talk about it for the kids. For those who are growing up publicly identified with autism – quickly growing towards a future that adults avoid, given half the chance.

My own autism diagnosis is a way of identifying with these kids and attempting to normalise it, so that when they grow up, hopefully they will encounter a less stigmatising environment than I have. Hopefully people won’t assume anything about them based on their diagnoses. Hopefully they will have equal opportunities for jobs even if they are “out”.

Male autism may be more out in the open, but it’s still not well thought of. When people talk about autistic traits in their male loved ones, in my experience it’s most often to imply “and that’s the way in which he’s a complete pain”. I know I fall into the trap of doing that. We don’t say, that person is so loyal, they’re a bit on the spectrum. That person is really passionate, I think they might be autistic. It’s always perceived from the negative. While this is the case, I wonder how we can really have a true insight into the numbers of autistic people and the ways it presents, as people will seek to distance themselves from anything with negative social connotations, even subconsciously. Until as a society we can grasp autism openly and for what it is, we won’t learn the lessons it has to teach us.

I look forward to the time I am not the first person in a conversation to say “I’m autistic”.

When we get towards that place, maybe that will reduce the diagnoses of depression, of anxiety, eating disorders, of BPD, of OCD (which I am also recently diagnosed with – as are many other autists). Maybe it might reduce suicides. Breakdowns. It might improve work productivity. Free people up to use their talents.

Maybe the rate of suicidal thoughts will no longer be 9x higher among people identified with autism.

Who knows, maybe, just maybe, we might change our cultural understanding of what autism is – as the visibly autistic women grow, it would seem likely that the numbers of “atypical” autistic men will also grow… And then maybe we will see something through these autism diagnoses that we are currently looking at through stained glass.

Until that time, I feel like I have to keep finding the guts to say, over and over again, “I’m autistic.”

If you’ve read this far, thanks. I appreciate it and I feel really passionately about this. I want a world in which people are ok to be who they are. A world in which we adapt the way we live to people – and stop expecting people to adapt to the way we live. Expecting people to adapt to the demands of chasing money is currently costing our mental health, the health of the planet and the future of our children dearly – but that’s an essay for another day. Autism diagnoses can be a tool that says, actually, we don’t fit with what is being asked of us. Our children don’t fit in the roles they’re being assigned to. Make room for them. Make room for human need.

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2 thoughts on “Why I decided to talk about my autism diagnosis”

  1. Thanks for sharing Hun. This is a really interesting blog. Enlightening and I promise to go and read up and research more.

    I know several males with autism, but have never heard a female mention it.

    There’s space for everyone. Each filling their own space which adds to the diversity of the nation and should be cherished.

    There are certain skills and jobs which people who have autism are brilliant at. They are often so detail orientated that they are fabulous quality managers for instance.

    We really need educating more so we know how to help. I’m grateful for your blog as it helps towards understanding.

    Could you maybe do a blog on, what you can do to help make things easier for someone with autism? What does is mean to you?

    How do we be better human beings?

    Until the next time, thanks and keep going, you’re doing a great job 👍🏼X

    Like

    1. Thanks so much for this lovely comment Nikki, it’s given me quite a lot to think about this week 🙂 🙂 I’m not sure I can write about how to make things easier for someone with autism because we’re as different from one another as non-autistic people are. I think listening to people is really important, and often autistic people (especially autistic children) are less likely to be listened to, because our needs can be seen as quite annoying or difficult to other people. I definitely plan to write about what autism means to me. Thanks again for your interest and support it means a lot x

      Like

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