Sensitive

"Don't be so sensitive", they say, "why do you take things so personally?"

I am sensitive. I thought I would grow out of it or learn to get a thicker skin. In fact, I never have. I feel like I walk around with no skin at all. Just nerves close to the surface. You can't get a thicker skin if your skin doesn't exist.

When people say things to me that are hurtful I can't just brush it off. It sticks to me like a barb. Even jokes, if they are at my expense then I don't see the funny side. I just feel mocked. I hate it even more if I have done something stupid.

People tell me the fault is with me. "Get over it, so I said a nasty thing, it's how you  react to it." Mean words, a room going silent, even a look, can pierce me like an icy dagger.

I pick up on the atmosphere of a room. If someone is being negative it brings me down. I don't like gossip that is personal. All I can think of when someone is being nasty about someone else to me is "what do they say about me behind my back?" I know gossip and 'common enemies' bond people but I just feel mean. Even when the target isn't me.

Kind words and kind deeds are reassuring and bonding for me. I get enough harsh words from my own self-talk. Negativity hooks into those thoughts. "I'm no good." "I'm differently." "They never liked me." When people have moved on and don't even remember the comment, it still stings, sometimes weeks or even years later. I don't have the flexibility to bounce back.

I am sensitive to words and emotions. I am sensitive to touch, sound, and lights. Many people over the years have found it hilarious to make me jump. They know how jumpy I am and it makes them laugh. They sneak up behind me. Jump out of places. Once they even lowered a toy spider on me. Some people love a reaction.

Now I know my sensory processing makes me sensitive to external stimuli and my emotional regulation makes me sensitive to internal stimuli. It isn't a choice to be sensitive or even my personality. It is my condition, ASD, and therefore how and who I am.

I am sensitive. I am always going to take things personally. Perhaps kindness and understanding is best for us all.

I do or do I?

Weddings can be a nightmare. They are the ultimate social occasion and celebration of relationships. For those on the autistic spectrum, combining a social occasion and relationships can be a mixture fraught with difficulties.

When I was younger I was always some distant relative invited to weddings. I spent most of the day hiding behind my dad. I didn't know who the people were and what I was meant to be doing. By late into the evening I became brave enough to watch the other children slide across the dance floor on their knees. People would come up to me and remark how I had grown and, almost surprised that I wasn't able to fluently chat to an adult I didn't recognise, then say, "oh is she shy?"

As you get older you start to be invited to weddings in your own right. This is slightly better. You are normally closer to the bride or groom and want to see them happy. There will, however, be plenty of people you don't know. Even the bride and groom don't always know everyone at their wedding. A long lost cousin or someone's plus one might never have met the bride, groom or even both. The couple want you to mingle and get to know people. If you do find a comfort zone you won't be there for long.

My wedding was my favourite as I knew everyone and there wasn't a break in the agenda. I kept the activities coming so as not to leave a moment of boredom or social awkwardness. Quiz questions as favours during dinner and a boat ride between evening and daytime. Even then, when I was doing endless photos, I am sure socially awkward guests were huddled in a corner using platitudes such as, "wasn't it a nice service?"

Weddings can be noisy rooms full of strangers and social rules. The good thing is that they are often formal occasions. This can be helpful. To know the dress code, what gift is expected, the order of events and how to behave is very helpful and weddings provide this in bucket loads. Those tiny little buckets that favours come in but buckets never-the-less. When people start using the term 'smart casual' or 'all we request is your presence at our wedding' then things get trickier. Do they mean smart or casual and do they want a gift or not?

The most difficult part of an invitation is if you are invited to the evening do only. This means that you are only a distant friend or relative or even worse a work colleague. By the time you arrive you have no chance. You have missed out on the narrative of the day and haven't a clue who anybody is and how they got so drunk. You have no choice other than to dance wildly to the music from "Dave's Mobile Disco" or go and cry in the toilets. You may also risk asking the mother of the bride how she knows the happy couple.

My advice would be to find a friend or couple early on and stick with them. My other brilliant trick is to take lots of pictures. The bride will love you for taking a picture her photographer and videographer didn't capture and you will be able to hide behind your camera.

Say cheese!

You just know

There is a feeling that you get that your child is different. You just know. Even if they hit their milestones. It is something that comes from watching your child grow. From being with them every day. You just know.

Everything seems more difficult. They don't quite sleep as well. Eating is a battleground. Potty training takes forever. The health visitors and midwives tell you that children develop at different speeds. It still doesn't explain how you feel. It is reassuring but only to a point.

Sometimes it can be a tangible thing. Lining toys up or constantly stacking and carrying things, rather than playing with them in a traditional way. Not answering to their name right away. Walking on their toes. Climbing over you to get to things. Covering their ears. It is fleeting. They return to 'normal' but you just know.

Sometimes it is just a feeling. They look at other children with expectation but they don't seem to 'get' the game. They talk a little too loudly or laugh a bit too much. Their faces are very expressive or not expressive at all. They operate at their own speed. They build dens to hide in. Like, other children. Just a little bit different. Every child is different they tell you.

You point at something for them to bring to you and they can't see it. They can concentrate on some things for ages or other things for only a few seconds. They fall. Spin and dance. Feel emotions strongly. Have their own strong will. Shopping is a nightmare. Trips out are intense. You feel frazzled.

Sometimes you feel that you are imagining it. They are like other children. You remember them being born and the relief that they were well. With all their fingers and toes. Perfect. Sometimes they don't look at you. Sometimes they don't play with you. Sometimes they don't seem to be interested in you. Then the next minute, they look, they play and they are interested. Yet you have noticed and you know.

Not staying with that feeling won't change things. As time goes on their differences are more tangible. You may need to talk until you are heard. You may need to persevere until you are seen. You may need to fight until they are supported.

You know and you know you know. Talk, persevere and fight. They think you don't know but you do.

The school gate

A massive challenge for me is dropping my children off at the school gate. It is pretty stressful and unpleasant for most people. Trying desperately to get a little person with their own sense of time and own agenda get to school on time. Yet for someone who has autism the challenge is even greater. It is the perfect mixture of sensory bombardment, awkward interactions and no obvious social rules, coming together in a twice daily event.

To get a little person dressed and ready on time is a organisational nightmare. No matter how much time you leave you will be late. Even if you left the night before. The school bags alone will get mislaid at least three times. The matter is made worse if your child has autism. They have their own speed of moving. This speed can be described as both slow and erratic. They have no knowledge of where their school bag is either, or, in fact, the trousers they were wearing just five minutes previously.

This will inevitably result in you sprinting to the school gate in a panic. Twice a day. The only difference is remembering whether you should have the child with you or not each time.

This higher functioning nightmare of forward planning, time management, organisational and executive function skills, are employed before you even set foot outside the front door. When you get to the school gates you would think it would get easier. Well it would, if you were the only people going.

Schools are eerily quiet places from the outside. That is except for twice a day. At those times, often a 15 minute window, thousands of people decend and try and deal with their own issues around time management. If you have sensory sensitivity, then good luck with that.

People are talking to friends in person and on their phones. Babies are crying, children are shouting, parents are shouting at children for shouting at babies. It gets loud. Crowds are unpredictable, jostling and moving at different speeds. This can be blanked out by the use of headphones and dark glasses but this is a social occasion and cutting yourself off from the world isn't necessarily helpful. You are modelling to your child how to behave in social situations and encouraging them to interact with their classmates. Children say hello to my son in innocent expectation and he walks right past them. I tell him that he is being spoken to. I secretly also want to walk right past them.

The people are the worst bit. I have a tendency to smile at everyone. I can't recognise faces, so on the off chance that I know them, I smile. Some people I do see twice a day everyday so I smile at them specifically. Sometimes they smile back and sometimes they don't. It is inconsistent.

Two mums in particular in my son's class I have smiled at twice a day for over a year and they have never even acknowledged me. It is getting to the point where I actually think they are actively trying to ignore me. This is confusing. The rule in my head is that you acknowledge someone you recognise. Otherwise it is just rude to that person. It doesn't have to be a big thing. Eye contact is made and you either smile or nod your head. Simple and polite. Especially if the person has done it to you first.

By the time I have reassured my son about going to school and tried to translate whatever it is his teacher has muttered to me, I feel like a lie down, only to then have to repeat it several hours later.

I am not into small talk. I don't think someone with autism really ever is. Yet I will chat and be friendly. This has sometimes led to some parents telling me their life story as I side step away into the distance. People love having a natter and a gossip. Something I have never really understood.

After the school gates close I stand in stunned silence. The sounds echoing in my ears. The movement, the jostling and the odd looks. Still deciphering the teachers comments, the new information about someone I don't know and their diabetes medication, the invite to a party my son just received and why when I see two of the mums everyday and my son plays with their sons do they still insist in not acknowledging my existence. While at the same time hoping my son will be OK and not get picked on for being different.

As I get in the car, I notice my son's school bag.

So that is where it was.

Different

I can remember the exact moment I felt different. I couldn't say the day or even the year. At a guess I was seven. It felt like I was seven. I might not have been. Whenever it was it was sudden and permanent. It felt like I was bullied from that point until the end of primary school.

I was asked in my autism assessment when I knew I was different. The question wasn't a surprise to me. I knew I was different. I just didn't know why.

I don't even really know why I was bullied. I just felt like I was joining in and then suddenly people seemed to turn on me. I remember they didn't like my ponytail. I wore it low and loose. They wore theirs like a horse. High up and tight. I didn't like that. It was too uncomfortable for me.

Later in primary school everyone got a perm and a bra. You couldn't have one without the other. I wondered why everyone wanted to be the same.

At guides I was at camp running from tent to tent with everyone else and then next minute I was sleeping on the floor with no idea where my sleeping bag was, pretending to be asleep as people whispered about me and I cried.

At secondary school it changed a little bit I met some like minded people and we stuck together. We were different together.

I used to get nervous on holiday. Meeting new people was difficult but I would make friends. Then another person would join in and they would go off together. My mum said threes never worked. It seemed like I was a good friend until someone else came along. I didn't really get it. Things just didn't add up. Threes don't work. Maybe it was maths' fault.

I still feel different. I like everyone but some people have said about me 'I don't think she likes me.' Like I go around not liking people for the sake of it. I just really don't know how to fit in and nothing has changed.

I have made a career and life out of being different. My uniqueness is an asset. There was a time I would have done anything to be the same. The bra, the perm and the ponytail. Sounds like a novel. Like The Lion The Witch and The Wardrobe. Every motivational poster tells you to be yourself but that can be a lonely thing. People working to stand out when you would give anything to fit in.

One of the main blessings and problems is my honesty, straightforwardness and fairness. People get jealous I am neutral and assume that I am up to no good. How can you be straightforward? You must be sly. You must have allegiances with people and not stand out. I feel I am not keeping up with the fickle and changing mood. I just am.

When I was at primary school I was bullied. Then I went into hospital for an operation. The class made me Get Well cards. I didn't know how the same people could be so mean and then so nice. People's changing motivation is a mystery. They change too quickly and I can't keep up. I am different but consistent.

Diagnosis

I decided that I had autism. Is that it? Can I just do that? The description of women with autism sounded like me. The women online who were sharing their experiences were different from the traditional, no eye contact, no empathy, mathematic loving, male version of autism but something that sounded more like my own experience.

I wondered if that was it. I could just decide I had it.

I spent hours checking that my hunch was right, I read and reread the descriptions online, to check that I hadn't made a mistake. Like when you have the flu then you check the symptoms and decide you have malaria or cancer.

I knew I was right, it just seemed to click. I wasn't worried. Just interested. I was pretty sure it wasn't malaria.

I was very excited to finally figure myself out. I wanted to tell people because I had finally understood my difficulties. Yet at the same time, I felt cautious. Would this change the way people saw me and what they thought of me?

I knew that my GP wouldn't believe me when I said I had autism. I had read that other women had problems so I found a way around it. You could self-refer to adult services. So I did.

I wanted to tell people the new changes in my life. I arranged a meeting with a friend and announced that I had autism. High functioning of course, probably Aspergers Syndrome. I explained the symptoms. My friend tried to make me feel better by saying that she felt similar in some ways. This made me feel confused.

I told another group of friends. They told me I didn't have it. I stopped telling people. I knew they were only being kind but it upset me. It was like they didn't trust my opinion and insight into my life.

There were several months to wait until a preliminary screening was available. The day of the screening appointment arrived. I was terrified. Suddenly I worried I had made a mistake or more likely that they wouldn't understand. Would they know that women are different to men? Would they see my struggles under the 'act'? Would they be aware that people on the spectrum can be funny, warm and friendly? Outgoing even?

At first, I struggled with the questions. Did I have an imagination? Did I take things literally? I was asked if I understood the phrase 'pull up your socks.' I said, "yes, like pull yourself together, work harder." Oh no. I understood it wasn't literally to put your socks on. I can't be autistic. Then I was asked if I thought of socks when the phrase was said. Oh yes. I had. I had the thought of socks first and then the translation. It wasn't a split second thing. I had been translating the meaning.

The sensory part of the interview was huge. I answered the questions with hundreds of examples. From daylight hurting my eyes to hand dryers hurting my ears. The person doing the interview said that much of what I had described had been exactly the same as other people even down to the exact wording. I then explained the moments of being misunderstood. Even the people who said they thought I didn't like them. I couldn't understand where they had got that idea from.

After the screening, I was put forward for the full diagnosis. I was happy I was believed and understood but the appointment was another year away. The wait was agony. I called a few times to check that I had moved up the waiting list and soon my time came.

On the day of the appointment, I waited at home as instructed. I had been cleaning the house for a full 24 hours when the time of the appointment came. The man didn't arrive. There had been a double booking. He was later very apologetic on the phone and rebooked.

The appointment was in a weeks time and it was like an eternity. The man arrived but due to the volume of questions it was done over two weeks and lasted roughly three and a half hours. Many of the questions I found difficult. I couldn't remember what I was like at three or even seven years old when I learnt certain things or even what I did now. Did I point? Shake my head? Some questions were a massive yes with loads of examples. Others were much more difficult.

I had heard that since 2013 that Aspergers Syndrome wasn't diagnosed anymore. The man explained that if I had the condition that the letter would say I had an 'autistic spectrum condition, formerly known as Aspergers Syndrome." I felt like Prince. I had never been formally known as anything.

I asked the man to send me the diagnosis before the report. I couldn't wait any longer. He did. The letter read that I had an autistic spectrum disorder.

Finally, I am what I always thought I was. I have a condition formerly know as something else. I am

something else but I haven't changed at all.

Why am I suddenly autistic?

I think I should explain why I think I am autistic. It came as a shock to me when I diagnosed myself. I asked myself for a second opinion. To be fair I had diagnosed everyone in my family and most people I knew before I got to me.

It started when my son's nursery mentioned his walk. I took him to the doctors and they asked if the nursery had mentioned any other symptoms. I went back and asked them and they said yes. He was struggling with transitions.

It wasn't really a shock to me. We described him in our family by saying that he had his 'own ways.' I had mentioned his difficulties with eating and potty training to health visitors but they told me that children develop at their own rate. I had seen my son line up toys like autistic children do but he was also bright, funny and warm.

He has empathy. We all do in my family. People with autism aren't supposed to be empathic. This is what threw us off the trail. I diagnosed my husband next. He was obvious. He is an introverted computer programmer. Apart from the empathy thing, everything else fitted. He felt upset for a day when he realised. He was frightened that I would leave him. Then he accepted it. It made sense to him.

I felt like a rose in the desert. An empathic person in a sea of autism. The only neurotypical. I was an empathic, creative person with imagination and I was an extrovert. People with autism aren't supposed to be imaginative and extroverted. That's what threw me off the trail, at first.

As I read more about autism I saw an article on women with autism on the internet. It said autistic women didn't care about their hair. They didn't understand why they needed to brush it. They wore comfortable clothes. They were disorganised. Autistic people aren't supposed to be disorganised. I looked at my hair, the jogging trousers I was wearing, my beloved trainers and wondered where my car keys were.

Suddenly I realised I was autistic.

I know autism. I have worked with autistic people at both ends of the spectrum and a few people who probably are autistic and don't know. I have done training courses in it. How could I be autistic for all these years and not know?

Half of my life has passed as a neurotypical and the second half of my life will be as someone who is autistic. Except I have always been autistic and now I see it. Every awkward conversation and each difficult memory flashed before my eyes. I feel more autistic than ever but nothing has changed. I have suddenly become autistic while remaining exactly the same.

I still don't know where my car keys are.

Early morning traffic

Hello. We are a family with autism. We didn't know we were. Although looking back we have always kept our ducks in a row. In this case toy cars. There seems to have been a bottleneck on the sofa causing delays of 40 minutes. Best avoided.