Diagnosis
I can well understand why some people might be surprised if I told them I’m autistic. To be honest it came as a surprise to me too.
I first started to suspect I was autistic around three years ago. My journey to diagnosis started when a friend came to me to tell me she suspected she was autistic.
I was surprised, as she didn’t fit into my understanding of what autism is. I already knew several people with Autism Spectrum Disorder, so I felt I had a good understanding of how individuals affected by the condition might present. However, I knew she wouldn’t have reached this conclusion without a great deal of thought and research.
It turned out that autism often presents very differently in women to men, particularly those with higher IQs. Though they may be experiencing many of the same issues and constraints as their male equivalents they are simply able to hide them better. This is known as masking.
Masking techniques are unconscious methods for hiding autistic traits in order to better fit in with non-autistic people. For example, a common autistic trait is a dislike of making eye contact. This may be very obvious in autistic men, but autistic women may learn to stare at the gap between someone’s eyes, so as to appear to be making eye contact.
My friend now knows she’s autistic, having sought professional help and advice. Yet, even as I better understood what autism in women looks like, it still took over a year from her first bringing the topic to me to suspect the same might be true of me.
During this year I’d been passing on any articles or videos that popped up on social media to do with autism in women. To ensure they were worth her time I would give them a read or a listen. I don’t know when I started to think, ‘This sounds like me’, but at some point it started to seem like the obvious conclusion.
(Just a quick note. Below I talk about therapy, and I went back and forth alot about whether to include this, but decided it’s important to normalise talking about therapy as much as possible. It’s not a big deal; have a cough, see a GP, have a bad knee, see a physio, have some mental niggles, see a therapist.)
At the same time as this was happening I’d been to visit a therapist. My reason for this was because I’ve always had a strong sense of guilt connected to very insignificant occurrences in my life. This could be something as simple as forgetting to buy someone a birthday present when I was 16, or accidentally mistaking someone for a shop assistant.
Alongside this overactive sense of guilt I’d begun to suspect I wasn’t a very nice person. This was a conclusion I’d reached from a lifetime of accumulated failed social interactions. I struggled to make connections with new people, who often seemed to find me odd or difficult. I also found that people often became angry at me unexpectedly, like I’d done something wrong, and I couldn’t pinpoint what it was. I was also aware I’d never been very good at maintaining friendships, and felt I had a very small number of friends compared to other people.
With all this available data (obsession with data and facts is of course a well-known autistic trait) I became very concerned that the logical conclusion could only be that I was an unpleasant person to be around. One of those horrible people that doesn’t realise they’re horrible (this might sounds like an odd conclusion, but reading up on autism diagnosis in older women it’s actually a surprisingly common belief among autistic women). So I went to therapy, because I thought it might help me answer this concern.
However, therapy (the two sessions that I attended) didn’t help as such. Now I know I’m autistic I understand why. At the time I felt the therapist really didn’t understand why I would react in certain ways. I felt she was at a loss as to why I’d reached my conclusions, or why what I wanted to discuss mattered. Still one thing she said seemed to chime with me. Taking on board everything I’d told her she pronounced ‘you’re an extremely logic-driven person aren’t you?’ I don’t know why but this suddenly made me think that perhaps she couldn’t help me because she wasn’t used to people like me, people on the autism spectrum.
Having spent almost half a year thinking and reading up further on autism I decided to pursue this line of reasoning. Feeling slightly stupid, and that I was probably wasting everyone’s time, I wrote an email to my doctor stating I thought I might be autistic and could I talk to someone about it. To my surprise he sent me back an online questionnaire. I filled out the questions as honestly as I could and the results came back as a 95% chance that I was autistic. This was when I started to treat my suspicions seriously.
Yet, this is also where I hit a stumbling block. The questionnaire I filled out was not a diagnosis, and I wanted certainty. Not only did I want to be sure for myself, but I’d heard again and again how autistic women had been dismissed by people because of their ability to mask. I felt an official diagnosis was the only way anyone would believe me. The NHS doesn’t provide adult diagnosis (the video above claims it does, but I’ve never met an adult autistic person who was able to access this help). Yet when I looked into paying for a diagnosis it turned out it would cost between £1,000 and £2,000.
So I contacted an autism charity. Luckily, though they didn’t offer diagnosis themselves, they were able to recommend another charity who did. Before contacting this charity they suggested I first see their autism specialist therapist.
I wouldn’t say I found this therapy session any more helpful than the last, it seemed a little like a box-ticking exercise. Yet this woman seemed to understand a little better why I reacted in certain ways. At the end of the session she told me she certainly recognised autistic traits in me, something which again made me feel I was on the right road.
Finally, I contacted the people who would eventually give me my diagnosis. The first step was to fill out a long and detailed questionnaire answering questions such as how I found being around groups of people, whether I experienced light sensitivity etc.
This questionnaire was placed before a committee who agreed that I should come for a diagnosis. I can understand why people give up before they get to the end of this process, it’s a long and difficult road and there was a lull, a period of two years, where nothing much happened. As with many such services they’re overstretched and underfunded. Of course I would have liked a diagnosis sooner, but I was simply glad I’d found someone willing to do it for free.
Finally, I got the phone call to say I was at the top of the waiting list. I was then sent another set of online questionnaires, with multiple-choice and written-answer questions. I think I filled in around five in the end. A time was then booked for my interview.
As well as having to be interviewed myself, someone who has known me since I was a child also had to be interviewed, in this case my mum. This step is needed because adults can develop autistic traits due to physical or mental trauma. In order to be sure the autism is inbuilt, so to speak, those traits need to be seen in you from a child.
The interview was a strange experience. I’d expected similar questions to those in the questionnaires I’d filled out, but many were quite different from before. Alongside the questions came a series of tasks. I was asked to bring five small objects with me, and then told to make up a story using them. Next I had to talk through how someone would brush their teeth, and finally I was given a picture book without words where I had to tell the story.
It did feel a little like the tests I’d carried out as a child when they’d thought I had dyslexia (I was given help for dyslexia for about a year, and then everyone went away and stopped taking me to special classes. I’m not sure if that means I was cured, misdiagnosed, or abandoned…). Mostly I felt like a bit of an idiot.
With every hoop jumped through, I finally got my diagnosis. I am autistic. It’s a strange thing to go through this long protracted process, as I’d been pretty convinced of this fact several years ago. But had wanted the certainty of a diagnosis. If they’d said I wasn’t autistic I’m not sure what I’d have done with myself, I’d have felt a little lost. So it was a relief, but not a surprise.
So I’m writing this blog just in case it can help anyone else with the process. Getting diagnosed is a personal choice, not everyone with autism feels they need a diagnosis, but for many it can answer a lifetime of questions.
Why get diagnosed?
One of the questions the autism therapist asked me was, “why did I want to be diagnosed?”. I found this a bizarre question at the time, but I now know it’s a common one. I thought hard about how to explain it and here is the metaphor I’ve come up with.
Imagine you spend your whole life feeling you must be slightly slow or stupid because other people constantly seem to be aware of things you aren’t. They point out hazards in the road, birds in the sky, and yet you always seem to miss them, and often can’t even see them when they’re pointed out. Then one day you’re describing your experience to someone and they say, ‘Do you maybe need glasses?’ If this could be the answer to why you’re always unaware of the things around you, why would you not go to an optician?
This falls down, of course, because you can’t get glasses for autism. However, what you can get is coping techniques. Something I realised half-way through my self-diagnosis was that I’d been implementing coping-techniques all my life. I avoid busy places. I give myself recovery time after socialising. I plan my life to a degree that irritates most people around me. There are hundreds of ways I have adapted without realising it. As such I already have a good pair of glasses most of the time, but the difference a diagnosis makes for me is that I can explain why I need these things. I’m not being difficult, they are simply necessary to allow me to be able to cope with the everyday.
I can now see that my autism is the root of my intense guilt. Now I understand myself, I understand my brain is not neurotypical and therefore sometimes trips over social-niceties that it isn’t programmed to understand. I’m not able to read social cues as well as other people, meaning sometimes I get in trouble without knowing why. People often don’t connect with me because my brain talks a different language to theirs, making it hard for us to relate to each other. It’s no one’s fault, but now I know why, I feel more accepting of these things, more able to let them go.
How autism affects me
Autism is a spectrum and it presents very differently in different people. As the saying goes, “Once you’ve met one person with autism, you’ve met one person with autism.” I am lucky that I’ve been able to build a life around my autism, with good friendships, a relationship and a job. For some autistic people this isn’t possible. I don’t want to take anything away from the struggle of other autistic people by explaining how it affects me, but I think it is useful for myself and others to understand how it can present.
Masking
It’s worth me mentioning masking again because it’s the biggest hurdle any autistic woman has to being recognised as autistic. According to my report I am very good at masking. This is both a good and a bad thing. It’s made it easier for me to fit into a neurotypical society, but it’s prevented me from getting help earlier. It also gets me into trouble as people assume I’m just being awkward. I would describe my masking like my fluency in German. I am very fluent in German, enough that Germans often think I’m a German too. However, I do make mistakes. Because of my fluency people don’t give me the leeway they would to a foreigner, who they know will get things wrong. Rather than a foreigner trying their best, I’m just a weird German. The same is true of my masking.
Social situations
The most obvious aspect of my autism is the intense stress I feel in social situations. This could be meeting a new person, attending a wedding, or even entering a crowded supermarket. At their least extent these situations make me feel a constant low level of stress. At their worst, I can’t cope, and have to leave.
I largely only attend large gatherings I feel I cannot avoid. Personally I prefer meeting people one on one, ideally somewhere quiet with no other people. Even better, we’ll be doing an activity, rather than simply talking, such as walking, swimming, painting pots, something to ease the pressure of talking.
Social interactions are also immensely tiring for me and I often plan in ‘recovery time’ if I know I will have to socialise for a prolonged period. In general, I would say an hour of intense socialising time is what I can manage before my reserves start to deplete.
The way I’ve come to think of it is, everyone is together out at sea. However, besides me everyone else is on a raft, while I’m treading water. We’re both able to stay in the same place, but the amount of energy expended by me is much higher.
Physical contact
I dislike all physical contact from people outside my closest friends, my immediate family, and my partner. One of the things that indicated to the assessors that I had autism as a child was that my mum said I had to be taught how to cuddle.
Hugs, handshakes, even people accidently brushing by me in a public place are stressful and uncomfortable for me. My boyfriend hates that I often leave things without saying goodbye. Part of this is down to the tendency for people to hug and kiss when they meet or leave. I simply can’t avoid contact from a relative stranger at the start of an event but, if I’m lucky, I can avoid one at the end.
Dislike of eye contact
I have always avoided eye contact. I believe that I have learnt to give eye contact, but I still avoid it if I can. When I was younger I never understood why anyone would want to have eye contact, it seemed an aggressive and unpleasant thing to do.
Facial language
I’m often asked if I’m angry or worried at times when I feel calm, emotionless, or even happy. I think many of the interactions I’ve experienced where people have become angry with me without me understanding why, are because my facial expression or tone made them believe I was being rude or disrespectful. In most of these situations I’m unaware of how I’m coming across. I simply think I’m being passionate, engaged or curious.
Bluntness
As with my ‘angry face’ I often feel I’ve been very politically correct only to have people complain of my bluntness. I generally feel I spend my life walking on eggshells, trying incredibly hard not to cause offense. This gap between my feelings and other people’s interpretation of me is probably because I want to be more blunt than I present, so I feel I’ve toned it right down (a masking technique). However, what remains is still too blunt for those who don’t expect it of me.
Sensitivity and overstimulation
Sensitivity to certain stimuli is common in autistic people. For me loud noises, bright lights, certain fabrics, certain foods and metals, can all cause discomfort. I don’t wear makeup, jewellery or tight clothes because these can make me feel uncomfortable. Parties with flashing lights and loud music feel like sitting inside a headache.
Something I struggle with a lot is overstimulation. Because of my autistic mind I’m able to take in more visual information in one go than many other people. This means that too much at once is almost painful. An everyday example would be flicking through Netflix, which hurts my eyes. I often cover one eye to compensate. Similar is true if I’m walking through a town center where there are many things going on at once. It’s for this reason I prefer quiet places, such as the countryside.
Unplanned changes
My life is very well planned. Yet many people in my life aren’t planners. This has led to me being unable to cope with a new item being added into the diary at short notice. It doesn’t matter if the change of plans is a chore or something I’d enjoy. In general, I require a minimum of two weeks’ notice for a change in schedule, or ideally at least a month. For a long time I couldn’t understand why people couldn’t see how stressful these changes are, now I know neurotypical people tend not to get stressed out by a last minute invitation to go out for a meal.
Emotions
As with many autistic people I have the double whammy of often having very strong emotional responses (the idea that autistic people don’t feel things is false, they just don’t know how to communicate their feelings), usually out of proportion to the issue, and difficulty talking about them. This is one of the reasons I really enjoy writing. There is a controlled order to writing down your thoughts and feelings, whereas conversations are often unpredictable and hard to control.
One topic kind of girl
A common autistic stereotype is the guy who is obsessed with trains. For women their obsessions are often bands, TV show, animals or art. Personally, I like nature and the environment. And unfortunately I don’t have as great an interest in anything else. This is a topic which fully absorbs me while I find most others pretty boring and struggle to engage with them. The good thing is nature and the environment covers quite a lot of things. However, it means I struggle to pay attention to many common cultural topics such as TV shows and sports. I remember being at a pub during university and someone asking me why I wasn’t joining in with the conversations. I said the subject doesn’t interest me. They looked shocked and said, ‘so if you don’t find the subject interesting you just don’t join in?’ It seemed completely logical to me.
Give and take
Something that was highlighted in my autism report was that I didn’t pick up on cues when the interviewer left openings for me to ask about their life. Now this has been pointed out to me I can completely see it. I am interested in other people’s lives but I struggle to open up the topic if the other person doesn’t bring it into the conversation. I often feel like it’s a train rushing passed me, and I just don’t know how to jump on.
ADHD
ADHD is a common companion of autism. Personally I see it as a positive trait. My ADHD drives me constantly to explore and build. Sitting still just isn’t an option. The only downside is I also struggle with concentration.
What does this all mean?
Luckily many of my closest friends are autistic or have ADHD. This isn’t unusual, as neurodivergent people often find each other easier to understand. That doesn’t mean that an autistic person and non-autistic person can’t be friends, it just means that there may be more similarities in how two autistic people may think, making friendship that little bit more likely. Many of my friends require the same things as I do. They prefer to schedule things months in advance, meet somewhere quiet, and leave fairly early to enjoy being alone again.
When it comes to interactions with people for whom this isn’t the desired outcome I’d simply say you don’t have to worry about it. I know what I need, and will probably avoid hugs and eye contact, talk about a newly discovered tree shrew, and leave early. If you’re still happy to have me there with all that in mind then great. But perhaps give me some notice before any invite, and remember I’m never really as angry or confrontational as I come across.
It’s just my face.
Post script
If you think you might be an autistic woman I highly recommend the book below. I found it very eye-opening and useful.
https://www.goodreads.com/book/show/25519486-women-and-girls-with-autism-spectrum-disorder
I also found the below book very helping in understand how I’m affected by ADHD.
https://www.goodreads.com/book/show/60446171-adhd-2-0
There are many famous people on the spectrum, including Susan Boyle, Anthony Hopkins, and even historical figures like Jane Austen are believed to have been autistic. But my favourites are the autistic comedians.