Whose Autism is it anyway?

As soon there were suspicions of me and family being on the autistic spectrum I wanted to write about it. I felt there was a story to tell. A story untold until the way I was could be explained. I felt it needed an explanation. I, found it odd. Other people, found it odd. Suddenly it all became clear. I wanted to explain. I wanted to clarify. I wanted to inform and help if I could. It seemed no one really knew much about the autistic spectrum despite there being so much public information out there.

When I was diagnosed I felt tremendous relief. I felt I needed a diagnosis for people to believe me so that they didn't respond 'no, not you.' To be honest all I received now when I tell people is 'oh'. I didn't have the courage to go and speak to other people on the spectrum.

I instinctively knew that others viewed autism differently and have different ways of expressing themselves and different fears and joys. I knew that some people wanted to celebrate the ASD that they or their child has. Others were in pain. They saw their children suffering and they wanted this thing to be gone. They wanted it cured. They had no time for these celebration people. They were at times hostile. I was afraid. Afraid of offending someone with my lack of knowledge so I made sure I knew what I was talking about by completing a year-long course on every aspect of ASD.

Looking for comfort and looking for acceptance. An acceptance which I had never received.  I joined a Facebook group of like-minded individuals. I was silent for a while but witnessed differing opinions. It seemed at times that people were scrambling around, confused, sometimes in the dark about things looking for answers and reassurance from strangers.

On one occasion one lady was corrected for something that she had said. It was about the levels of ASD. Many people jumped on this and the girl felt she had to leave the forum. I explained what  I had learnt about the levels on my year of study.  The girl hadn't said anything that was based on opinion. It was factually accurate. As someone who finds accuracy important, I tried to kindly shed light on what I thought she was trying to say.

The group turned on me. I explained that I wasn't saying I preferred levels but that that was how it was being done at the moment. They told me that I was typical of someone who was diagnosed later in life and that I should ask autistic people what they think. I found this odd as I am autistic.  I could ask myself. The comments hurt me and left the group. I guess it is ironic that a misunderstanding should impact people who have communication difficulties. I thought it was more than that though. I thought it was people not listening, not accepting others and actually being quite mean.

Now there was another divide, between those who have been diagnosed  most of their lives and those who have been in the dark for so long. I have taken on board what was said to me and I try to bear in mind. Unfortunately it silenced me. I didn't write on this blog any more.  I suddenly felt I had nothing to say.

I have now decided that I only ever spoke for me. That is the only person I can speak for. It is worthy of sharing and people can ignore it if they like. I can only speak about me. I can only speak about my autism but after all whose autism is it anyway?

Loneliness

I feel lonely. Maybe not all the time but probably most of it. If I were to stop and think about it, I would realise I was lonely but I try not to stop and think. I lack a connection to people that I have never understood until I realised I was autistic.

I have told people in the past that I have felt lonely. It only happened twice. Once with a housemate and the other time with a relative. Both times it was a cry for help, for my difficult feelings to be seen, but in both cases, it was ignored and never mentioned again. If someone told me they were lonely, I would ask them what I can do and if necessary never leave their side.

People say you feel most lonely in a crowd. I would agree. The more people around you, the more lonely you can feel and the more guarded everyone else is. I have seen close friends change in an instant in public. Even to me. I want to say, "What are you doing?" "It is just me. Be yourself." People aren't, and believe me I understand. Being autistic, most of my daily interactions are, to a certain extent, faked. It does, however, mean I am quite consistent in the way I am. The act is now me. This is who I am, a social being I created. To call it fake is unfair. It is more real than real. If I have to exist in the social world, then this is how I do it. If anything, others are faker than I. My act is more real than theirs. If I get the chance, I say how I feel, but it isn't really that accepted, so I go back to the version of myself that is accepted. In neuro-diversity terms, it is known as 'passing'. To pass as a regular person, whatever that is.

I used to be exceptionally shy. I think society understands shyness in girls and almost prefers it. As a child, I once went to a pantomime on my own. I was sat with another girl on the coach. I didn't know what to say so I pretended I had a toothache the entire time. From an early age, I have managed to make friends if there is only one person but as soon as someone else came along the original person would go off with them. I thought my loneliness was because I was an only child and I vowed not to only have one child myself.

Before I was married I felt so unbelievably lonely it hurt. When I got married, for the first time I felt complete and to a certain extent whole. My children also mean that I am less lonely. Yet I still feel lonely. It is like a shadow. It is sometimes large, and at other times small, but it is always there.

I am now quite extroverted and some people don't believe I have ever been shy. I recently was at a party and I knew most people. I asked to take a selfie with two girls I knew. They then asked me to take a picture of them together. Later, I looked at the picture of the three of us and they were huddled together and I was stood slightly away. Not my choice. Just the way we had stood. I was different to them, at some almost imperceptible level.  I have lots of these photographs. This same photo has been recreated year upon year with every friend group I have ever known. They know intuitively that I am slightly on the outside and this is where I end up standing.

Knowing I am autistic goes some way to explaining how I feel and has taken the pressure off. I no longer keep wondering why am I different. I know. Will the loneliness go? I hope so but I am not sure. What it does do is show me the deep loneliness in others, and that, I can do something about.

20 pints of milk

I was helping out a friend and she sent me a text message, "Please can you get me 5 x 4 pints of milk". Simple enough I thought and went to the supermarket. My friend clearly wants 20 pints of milk in 4-pint containers. I buy 5 my friend is happy.

When I get to the shop there are no 4-pint containers to be found. There is either 1 pint or 6 pints. I don't think my friend would be happy with 20 bottles of milk but does she want 20 pints, or would more or less be OK? What if she wanted the 4-pint container because it was the right size for her freezer?

I call her. The line is bad. I say, "There are only 6-pint containers." She says, "I only want 5." The line breaks off. 

5 what? Pints? Not 20?

Oh no! I nearly bought 20.

I call her again. I shout down the receiver, "How many pints do you want?" She shouts back "20 pints." "They only have 6 pint containers, how many do you want, 18 or 24 pints?" I reply. "Get me 3 or 4 containers," she says. 

3 or 4? 18 pints or 24 pints? Would one be too less and the other too much?

I asked "Would 18 be enough?" My friend said, "24 pints is fine."

I buy them.

Most people would have bought what they thought was right. I didn't want to waste my friends money or not get enough. Autism can hinder you at the moment others wouldn't even be bothered. It makes us very reliable and precise but sometimes causes us confusion. We are capable but you might just have to clarify on the phone the odd time.

To my autistic child

You are special and more unique than you'll ever know. While everyone else tries to fit in and follow, you are so focused on the things that interest you. You look at things from a different angle and see the beauty that they miss. Art and music touch you deeply. You dance, spin, twirl, clap and sing.

Your emotions are strong and because of that you feel great joy, wonder and awe. The smallest thing can hold hours of delight. You know sadness too but this will show you how others may suffer. The world has lots of suffering but it is what unites us all as human beings.

You are determined, dedicated and trustworthy. You keep your promises and don't want to let people down. You may be seen as too honest but to many this will make a refreshing change. Others will warm and open up to you in ways they wouldn't to others.

Your heart is massive. Sometimes you may need to close off from the world if the feelings become too strong but use this time to recharge and replenish. Your sensitivity will help you understand people, animals and the world better. This fuels your need for fairness. Fairness, kindness, and doing what is right is important.

You have a great sense of humour and your laugh is infectious. You remember facts and love to learn. A comment from you can be wise and insightful or make people howl with laughter. You are as people find you. Straightforward and consistent. In an ever changing world of loyalties, you remain loyal.

Others may not see you as I do. They may laugh in a mean way or not get you. They may try and exclude you or worse. That is their loss. If only they took the time to see what a wonderful person you are and what a good friend you are to have. Waste no time on such individuals.

People who doubt you, don't realise that you are a precious butterfly and if you decide to land by someone then they are truly blessed. They should be glad that someone so beautiful and interesting chose to land by them. They should be quiet and gentle until you feel comfortable and then admire what you have to offer.

I hope the world sees what I see. A funny, clever, big hearted, trustworthy and dedicated soul, and I couldn't be prouder.

Everyone seeks to be themselves truly, but few really are. You are one of them.

Yours forever grateful to know you.

Your Mother x

Making Sense

How do we perceive the world? Is my red your magenta? Is that why people wear Hawaiian shirts and others are blinded by them?

Autism Spectrum Conditions have a sensory element of either being under or over-sensitive to stimuli. This sensory processing difference is often seen as just part of the symptoms. I, however, think that either the sensitivity or under sensitivity is a key part of autism rather than a simple symptom. Socialising and communicating are going to be more difficult if you have to process all the assaults on your senses.

My senses are hypersensitive. I have only recently discovered this or at least become consciously aware. I should have realised. I once threw my husband out of the car for eating an apple. It was just too crunchy.

Showers are a massive problem. When I was a teenager I hardly showered and that wasn't just because I was a teenager. The water comes at you like little knives. You have to cower in the corner of the cubicle beside the loofer. If you had a loofer, which you don't. 

I get in my car and the stereo is too loud. It is particularly odd because I am the only one who touches the stereo. I have made my own stereo too loud. That is an important thing to remember. That my sensory reaction changes over time. Sometimes I can go to a party other times daylight is painful. It feels like a hangover. Sunglasses on even when it is raining. Most people think that my reaction lenses are slow to react. Why else would I be where sunglasses indoors or in November?

Sometimes I listen to loud music and at other times someone clearing their throat frightens me to death. 

The biggest clue to my autism was supermarkets. Whoever invented vast warehouses full of flashing lights, smells, music and hundreds of people were clearly not autistic. That is why we have online shopping. Unfortunately, you still have to open the door to the delivery man. Everything has its downsides. We need to iron that out.

If you see me in shades, with headphones on, with head down. I am blocking out the world in order to exist in it.

Turn the light off would you?

The Hawaiian shirt is between you and your conscious. 

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.

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.