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Feeling a bit more free

IMG_8027An explanation not an excuse
An understanding not a pigeonhole
A badge not a category

A gentle twist of perspective and a kinder acceptance of me from others and from myself.

That’s how I feel about the conclusion that I have an autistic spectrum condition – one that if I had been assessed for 2 years ago would have been called Asperger’s. I’m still going to call it Asperger’s and call myself an Aspie. Asperger’s is different from other autistic spectrum conditions in that there is no delay in language development in childhood. Because people with Asperger’s have no language problems, it can be harder to spot, and I’ll bet there are hundreds if not thousands of people living with it that are unaware and are putting their traits and behaviours down to other problems or conditions.

The dust is finally settling here. It’s been a rather swift arrival at a new and different sense of self from that first decision to seek diagnosis in February, through all the reading and email queries I sent in March and the appointment and conclusion in April. It’s such a short space of time to be switching your thinking about yourself so drastically that it’s been dominating my life. It’s been a whumping great deviation from the me I thought I was three months ago to the me I’m just getting to know and love a little bit more now. But just knowing for myself that an autistic spectrum condition was very, very likely didn’t give me enough of a feeling of the affirmation I needed. I, personally, needed more relief from elsewhere – exoneration perhaps? Something that would be a metaphorical and literal document I could wave at people and give the whole process a seal of approval. Although I accept that others say just knowing for themselves is enough, I don’t understand it. For me this is as much about other people as it is about me. Why should I pretend? Why should I give the wrong impression? Why should I be dishonest about my feelings? I need other people to know about this and think about this and realise how difficult life has been for me. I want everyone to know that I get sensory overloads, how I can’t cope with situations I can’t control, how I need a bit of extra TLC sometimes. How I simply am different, and how fitting the neuro-typical world is very bloody hard work on a regular basis for me. At the moment while I am still processing everything, I am pretty much totally wrapped up in the whole thing and feel like slapping bright paint all over my body and running around naked so people can see just how different and out-of-the-ordinary I really feel.
“Normality” and expectation do still take up a great big chunk of my life though, as I find myself getting on with all that is needed to make a home tick along. It took a week (and a mini-meltdown) before I allowed myself the indulgence of sitting quietly and reading my report through properly and giving me the me-ness I need to carry on.

To the untrained eye I may not look any different and I may not behave any differently from they way I was 3 months ago. Why should I? Why would I? But, actually, already, I am: I’m standing taller, I’m holding myself differently, I’ve swept my hair from my face and I’ve lost a little weight. I’ve stopped pigging out, and I’m beginning to stop hating myself. I’m smiling more. I’m being nicer to my husband, and I feel we’re getting on better than ever. We’re having conversations about what it’s like to be me and I feel that that’s okay and he’s not annoyed or irritated by it (not every time anyway). And it’s not all negative anymore. It’s not only a string of problems anymore. It’s about how I’m different and there’s no point pretending otherwise. I feel calmer and less angry. I can actually see how I might just be a little bit lovable and I don’t feel so insecure about Richard’s feelings towards me.

The changes in my thought processes and my patience are marked too. But only to me. Despite appearances this is massive. It’s rearranged my whole history, my whole way of looking at life and given me a “now” – a “here and now” that I didn’t have before. This time is good. This age is good. I’ve been waiting all my life for an age and a time that suited me – I’ve always felt out-of-place and now I feel in place. The myriad of little tweaks Richard and I have had to make in the last couple of weeks to the way we look at me have answered and explained everything. All the knots are going and everything is gradually smoothing out. It’s like I was all at sea before and now I’m sailing. It’s all at once both the same life but a totally different one too. And I know that makes sense! It just does.

The girl who was too quiet, fidgety and reluctant to join in and who slowly dropped out of education has been reformed as the girl who did well to cope considering what she was dealing with and how difficult it was to concentrate in a classroom situation, and who should have had more support and understanding.
The unsettled, emotional young woman who failed to hold down a job for any length of time, and who was never satisfied with anything has been reformed as the perfectionist, Aspie woman who fought bravely against her instincts to run away and hide for years and who deserves a pat on the back for keeping on keeping on for so long – but who should have had more support and understanding.
You can’t get support and understanding for nothing though. How can you get other people to support and understand what you don’t understand yourself? Life was all about fears that I knew I shouldn’t have had and I never talked about my difficulties – they were too weird, too not normal, too untypical. I could see how other people seemed to enjoy doing things I hated, and endured things I couldn’t even contemplate, and I couldn’t see around, through or over that. I just kept schtum. I have been held captive in a solitary cell for years where the bars were made of “normal” and “social expectation” and “guilt” and “what does everybody want from me?” And I never knew the only key to open the lock was understanding.

For years a favourite song of mine has been I Wish I Knew How It Would Feel To Be Free sung by Nina Simone. I will play it and twirl around the kitchen with tears in my eyes. I’ve always felt trapped, and known I had an inner me and an inner strength that didn’t know where to go or how to show itself. But trapped by what? I didn’t know. I tried to guess. I made things up. I think now I felt trapped by what I didn’t know and what I couldn’t share. This line in the song always stood out for me, but now more so than ever: “I wish you could know what it means to be me.” No one can ever know what it means to be me, but some books written by fellow aspie women have come pretty close, and that soaring feeling of finally getting somewhere makes me just want to cry all over again.

I took the first steps by being honest in my writing about five years ago. It was like the old cliché of opening a vein onto the page. Once I started, thoughts and feelings came flooding out that even I didn’t know I held. From that honesty and new perspective came questions:
Why did I feel this way, behave this way, want a different life from so many others?
That honesty – and the bravery it took, and the support from people who read my writing and didn’t mind about my foibles – or who seemed to like me for them anyway was good but not good enough. It’s great that people can say ‘I know you’re shitty sometimes but I love you all the same.’ But what if I don’t feel I’m being shitty. What if I don’t believe I am shitty? What if I’m not being shitty? What if it’s because I’m speaking a slightly different language from a slightly different perspective and actually there’s not a thread of shitty in my intent. I’d rather people could stop seeing me as likeable shitty but instead as someone with autism who is having a meltdown or a crisis in communication. I’d rather people took the time to understand that autism can sometimes mean feeling shitty looks like being shitty, but it’s not the same. It’s really not the same.
And it’s great for online friends to say it doesn’t matter that I’m unsociable. But what about the people offline? That shortage of social interaction face-to-face can really cause other people problems. But what if I’m actually not unsociable at all? What if I’m burnt out, struggling, exhausted, dying for some time out. I’d rather people saw me as a woman with Asperger’s who has to battle anxiety beyond anything anyone else can imagine on a minute-by-minute basis and see how I need extra care, extra time and an understanding of my silences. Just not answering someone is weird and potentially rude, but just not having the words or the energy is different. It’s okay to be me but even more okayer to see me through the perspective of autism and let people see it’s not what they thought.

My point is I wasn’t good enough for me without Asperger’s as an explanation. I give off an aura of something I’m not. I hate how I don’t cope and I hate all the horrid physical symptoms that being anxious give me. Now I know what tools I am and am not armed with, I know I am coping better than I thought and I always was. It was just that I was trying to drink lemonade when my body is designed to drink chamomile tea.

So now I know I’m okay and I need other people to know I’m okay. And not just okay in the Old Rachel sense of the word but okay in the New Rachel sense of the word. New Rachel has something to tell you: She has Asperger’s Syndrome, AKA autism. It wears her out. If she’s being seemingly normal around you, then you can bet your bottom dollar she is making a non-stop huge effort and that after you’ve seen her she will be exhausted and crave solitude and quiet. If any situation goes on for too long she may need to escape or there’s a chance she’ll blow, behave weirdly or simply stop talking. Rachel doesn’t crave the company of people or social situations like other people do but she can enjoy controlled situations in short bursts – especially with people she can be herself around. She likes her home and her husband and her children, her dog and her garden and her peace. Rachel loves other people, thinks about and worries about everyone regularly. She is genuinely interested in other people and finding someone she has something in common with makes her super happy. She has a deep interest in society and human behaviour and wishes the whole world would be nicer to each other but she realises now she has to be nice to herself first in order to survive.
Rachel can’t stand something going on around her when she is trying to think. It feels like it stops the pathways in her brain from working. She needs to shut everything out in order to be creative. Rachel feels she must be creative regularly to feel whole.
Now that you know it is Asperger’s and not depression or rudeness or laziness or a bad attitude or hostility perhaps you can see why she needed this assessment and understanding and how it is helping her.

I don’t need anyone looking after me. I’m a coper, I’m a determined, bloody-minded fighter – and I now know a bit more about the extent of that fighting. But I do need care and I do need the right to go ahead and be an autistic person. Because that is what I am. And now I’ve got that right.

Not doing “normal” very well knocked my confidence and my self-esteem. As my school life worsened and I graduated into adulthood unprepared, I slowly lost the belief that I was as clever or as capable as some of my peers. I began to feel that no one else believed in me either. When you are young, thinking that no one believes in you can stop you chasing your dreams. The psychologist wrote on my report that my problems increased when social demands increased and that I underestimate my achievements. Understanding the connection between my life experiences and the difficulties imposed by my condition makes everything make sense. I understand how my sensory problems and anxiety have altered my sense of self because of the way I experience the world. One of the first things the autism assessment did for me was put to bed any doubts about my intelligence. I scored on the 98th percentile for IQ and for verbal comprehension, and the 92nd percentile for perceptual reasoning. When the psychologist told me I was in the top 2% for intelligence I assumed I’d misheard her.

I wasn’t entirely sure what I wanted to read in my report. Once I’d got the verbal conclusion from the psychologist on the day of my assessment I didn’t know what to expect in the post, but what I got was like a great big hug: There was the acknowledgement that what I’d been experiencing all my life was difficult and traumatic and a suggestion that my better understanding of it would help to reduce stress but there was also a recognition of my exhaustion, my achievements (it’s nice to see them written down by someone else!), and, better yet, there it was in black and white: “Through assessment and subsequent reading on the subject, Rachel will be able to obtain a clearer understanding about the nature of her anxieties. This means there is an opportunity for Rachel to accept some areas that she finds just too difficult (and not have to feel guilty about it).”
There. That’s what I wanted. I need to stop feeling guilty.

The psychologist concluded my report with words that made me cry:
“Rachel has shown great internal strength and resilience to have achieved so much already. I’m sure that with the greater understanding she has about Autism Spectrum difficulties and sensory difficulties, she will be able to decide on what other areas of life that she would like to tackle.”
For now I’m just concentrating on getting to know the new me and looking at everything I do and feel in a new way. And giving myself permission to be alone because it’s okay to and I’m supposed to.
Along with all this I’d rather people knew why. I’d rather people understood, and I’d like Richard to be armed with the knowledge to explain on my behalf if ever he needs to. Because just acting weirdly or differently leaves people to fill in the blanks with the wrong information and that can hurt.

The psychologist hoped I had found the process a positive experience. I can honestly say I can’t think of anything else I’ve done in the last few years that has been this positive. Talking to someone who is neither friend nor family who was simply there to gather information meant Richard and I could both talk honestly about things we didn’t perhaps feel comfortable telling other people. It also meant that, as someone official with years of experience working with people with autism, the psychologist made the whole thing real and something to be taken seriously – because no matter how much people claim to know you and understand you, unless they have autism themselves they don’t “get” it. How can they? I think it helped Richard to take the whole thing about me more seriously, and I really hope it means he respects and admires just what it’s taken for me to come this far.

Never underestimate the power of a woman with autism. And never underestimate the power of an autism assessment.

Bashing a Square Peg into a Round Hole

shutterstock_46095241I think it’s safe to say that if the human race were mainly made up of autistic people it would be quite a different place from the world we recognise today. If countries were run by highly-functioning autistics/people with Asperger’s, the rules would be a bit different. There would be a greater emphasis on fairness and many world problems would be solved by people who prefer to do rather than talk and give speeches all the time. There would be a gobsmackingly big increase in new inventions and new medicines. And all itchy uniforms would be ditched for soft, comfy cotton or nudity. There would be Escape and Chillout Pods in every shop, school and workplace. And it would be illegal to say ‘Face your Fears’ ever again. But there might be an unusually high resistance to change and there would probably be some pretty polarised views on what is and what isn’t important or interesting and what we want for our children. Despite a strong sense of justice and a fear of conflict and pain, it’s just possible that too many people with strong views one way or the other might cause stand-offs between communities and nations. Maybe the risk of war would be greater. Maybe it would be equal. Or maybe we would do away with war all together because there would be no soldiers, and no one thought to create weapons. Why the heck would you want to waste time and money killing people, after all? Maybe however much we disagreed with our fellow earth dwellers we just wouldn’t see the point in fighting. In an autistic community you can just ignore the people you disagree with.

But where would the sense of community extend to? Would it end where the house wall ends? Where the street ends?

In my thinking my community goes on and on. Its reaches right around the world and back again. I am not restricted by manmade barriers. I think you’ll find a lot of autistic people show concern for those beyond an observable community in the sense of a street, a village, a country or a set of beliefs. We are not constricted by the same structures. We are often so alone in our world and in our thinking that we are not confined by the same social constructs and actually think bigger.

I’m thinking a lot this week about how society behaves. How people expect a lot from each other without having a clue about how demanding they are being. There are sets of unwritten rules about manners and appropriate behaviour that are so set in stone, so conventional, they are not even discussed.

And then someone like me comes along who doesn’t play by the rules all the time and then they are discussed. Like apparently not looking at someone and holding their gaze while they are talking to you is rude! I didn’t know that. How is that even rude anyway? In the autistic world we see staring at someone in a conversation as a threat, as a challenge, as a distraction. It’s much more pleasant, sensible, polite and friendly to move your eyes around a bit and not threaten other people. If someone loves you, they’ll stare at you safely when you’re not looking. Give them space to think. They know you’re interested in what you’re saying. Otherwise you wouldn’t even be in the same room together! Obviously.
In this world, run by autistic people, you 1 in 88 of the population non-autistic people (1 in 88-ish. That number keeps changing – I don’t know what you’re up to…) need to learn the rules and do as we do. LOOK AWAY WHEN I’M TALKING TO YOU! Just turn you body toward me and nod now and then.

And then there’s that thing when if someone’s having a birthday you’re supposed to ask a load of people to do something with you of an evening. Maybe go out, maybe have a dinner party. Yeah, right. Why would you want to do that?! In the autistic world, you get your favourite thing for tea, you have it by yourself or with your 1/2/3/4/5 favourite person/people (okay 5 is stretching it a bit) and watch your favourite programme or film on telly or even just hang out with some other hermits on the Internet. Now THAT is how you have a good evening. DO IT! You can have alcohol too if you need it and even have a little dance when no one’s looking. Groovy is still happening in Autistic World. Don’t waste a load of money and a load of time making idle chit chat and gossiping with people you don’t know EXCEEDINGLY well. You know it’s better if you’re around people who don’t mind you picking your nose or suddenly swearing. Don’t forget we are the normal now – you are in the minority. You must make yourself fit however unnatural it is for you.
Try harder.

You don’t like it?

Shame. I’ll get my hammer and make you fit.

Bash. Bash. Bash. Okay so it hurts. You’ll thank me for it later.

Only I wouldn’t do that, would I? I have an enormous sense of justice.
You just do what feels right, love.

Must dash I need to cut the itchy label out of my jeans.

Please Don’t Let Me Be Misunderstood

Little makes me happier than a coming together of minds: a shared joke, a joint appreciation or an understanding. Despite occasional appearances to the contrary, I am acutely curious and passionate about others and actually thrive on human interaction, so other people’s responses are crucial to me.

This is why not much can upset me more than feeling I’ve been misunderstood.
It leaves me feeling wounded and shaky like a frightened animal.

It’s partly an almighty disappointment with other human beings: that no one – even the best people – will ever completely understand another person, combined with a sense that yet again I’ve failed at human connection. I spend some time wondering whether it’s my fault or someone else’s. I pick myself up again and again and wonder why I’m getting it so wrong and why I care so much.

Sometimes I think it’s because the words tumble out too fast. There were too many on my lips and they’ve come all at once. People see those words and make their own sense of them and suddenly I’ve said something I haven’t said. Or I haven’t managed to say something I wanted too. I’m upset that someone doesn’t know me enough to know that I can’t possibly have meant what they thought I meant, but also upset that I’ve failed to make myself clear.

Double failure.

This kind of human error is a big heartbreaker. It causes a kind of distress and a tension on already frayed threads and loose connections with what should be ordinary, straightforward social behaviour.

Some days I fail repeatedly and probably should just give up, stop digging and stop expecting. But the message that today was not a good day to communicate is delayed, and all too often and all too late I wish I’d stayed hidden.

There’s a misconception that people with Asperger’s don’t care overly about others’ feelings but it’s far from the truth. We care so much, that to think we’ve got it wrong is often almost too much to bear. And so, of course, that means it’s easier and safer to give it all a miss now and again and save the pain of fluffing it all up yet again. I would bet a large sum of money that people with autism are far more aware of and affected by other people’s feelings than anyone gives them credit for.

Constantly trying to figure out who wants what from you and how best to avoid failure is exhausting and distressing, and we often get it wrong. That’s why I think people like me find it easier to be alone. Not because we don’t care but because we care beyond anything we are capable of dealing with.

Giving History New Meaning

I’ve taken last night’s thoughts from my blipfoto daily photo journal and put them in here:

Things have been a bit slow.
I think it’s probably the fallout from Monday’s assessment. Yesterday I had a headache all day and today I’ve had a stomach ache all day.

I was expecting some sort of emotional and physical reaction while I recovered from the stress and anxiety pre-assessment, and my reaction to the psychologist’s feedback post-assessment.
Even though it was what I’d been preparing myself for, it’s an awful lot to take in.
After all it’s only 2 months since I started contemplating the likelihood that I have Asperger’s.

The last 2 days I have been churning with memories of school days and wondering how much better things could have been had I been diagnosed as a child (obviously not possible in the 1970s and 1980s). My grades dropped and dropped and dropped, the enthusiasm of my teachers dropped and dropped and dropped, and my ability to be accepted for who I was by my peers dropped and dropped and dropped.

The psychologist said I did incredibly well in the tests. She said even when I said I wasn’t sure and said I was guessing I was getting things right. She said I was in the top 2% intelligence-wise. She looked through my school reports from the age of 5, and when she got to my exam results she was surprised. She said she was expecting much better. But I’d given up. I think I started not bothering at about 10 years old but was always hoping things would get better. Only they got worse. I gradually convinced myself I wasn’t very clever after all.

I’ve been thinking about the girl who bullied me at secondary school. And the girls who participated in her taunting. What if I’d been protected from that because of my vulnerabilities? What if the teachers had known why I was so quiet, why I had to be so quiet? Why I had to look down to listen. Why I couldn’t bear to stay at school in the lunch hour. Why I struggled to organise myself. Why I often wasn’t sure how to behave or how to fit in or what to wear.

I know that we are the sum of our struggles and not just our achievements and they make us who were are but I would like to take away some of the pain from my past.

School was a big pile of shitty crap for me. The years after school were difficult too as I struggled to find my way in the world and couldn’t understand what was expected of me.

All I can do is write about my experiences and hope that things are improving for today’s young people with the higher functioning, less easy to spot autistic spectrum conditions because some sort of acceptance in ourselves and from everyone around us can make all the difference in the world.

It was tough being a teenager. It was very, very, very, very tough. I never knew just why it was so extraspecially tough until now and I want to go back in time and rescue that fragile, vulnerable young girl and tell her she’s alright. I want to tell her school teachers and her school mates that she’s alright. I want to tell everyone who misunderstood her that she didn’t have a nasty bone in her body, that she’s a really loving, forgiving person and she deserved better, kinder and more thoughtful.

I want to tell everyone who fills in the missing information about someone they don’t understand with nonsense they’ve made up in their own head to be less shallow, and if needs be just accept that they don’t understand.

Screaming in Paradise

We were talking about meltdowns in my assessment on Monday and I said how I’ve managed to avoid many all my life through fear of others and my strong awareness of appropriate behaviour. But that is sure to be the reason I suffered with stomach aches all my life. When I was young I would wait until I could go to bed and cry or I would rip things. After school I would often run home and I think the physical exertion helped. But the feeling of needing to explode doesn’t go away.

As an adult with responsibilities I would say for me it’s got harder. There’s an urge to smash something or scream or run away, and Richard was telling the psychologist how I often sink my teeth into my hand when I’m teetering on the edge. She called this self-harming and I hadn’t thought of it like that before.

When Richard came home on Saturday he found me pacing and winding up. I don’t call it winding myself up because I actually feel at the mercy of something beyond my control. I think I’d waited until there was another adult around. I kept saying I don’t know what to do, I don’t know where to go with these feelings, I need to break something or explode somehow. In this case ranting and pacing and then spending time alone in the rain calmed me down eventually but it’s such a horrible place to be when it’s happening.

Holding on and holding back and being calm all day and just keeping going is so tough. I write lists, I make sure I know what’s important and how to feel I’m achieving but there are still days when, despite actually being quite cheerful and the sun shining, there is a strong desire to stop the world turning because I feel I’m not holding on properly. Shouting and yelling and pacing works to a point but it doesn’t make me feel good: it makes me feel sad that it got to that. Having somewhere I could crawl into and curl up in a ball and have a nap would be nice. But I’m the grown-up, the parent, the adult, the responsible one so I keep on fighting and waiting until the the chance to open a valve and release some steam occurs.

It’s hard being an adult with Asperger’s.
It’s hard being a woman with Asperger’s.
But when you’re a wife and mother too the juxtaposition of domestic bliss and contentment against an overloaded brain and sensory system is often impossible to explain.

Assessment Day

It’s the morning of my assessment for Asperger’s, and I’m close to cacking my pants (excuse the graphic honesty!). I’m so glad this day has finally come though because these last few weeks of waiting have become more and more fraught as time’s gone on. I’ve had so many restless nights recently and I am mainly being powered by adrenalin and tea. I can’t imagine having to wait the estimated 2 years currently expected through the NHS in our area! (I’m sure it’s just as bad elsewhere) and I feel sure I would bottle out given that much time to worry about it.

I only vaguely know what to expect of today: my psychologist has given me a rough itinerary over the phone – which I was sensible enough to write down, otherwise I would have completely forgotten. But I still don’t know what it will involve or how things will go. That uncertainty is really scary.

I’ve swung back and forth over the last few weeks from thinking there’s an extremely good chance I have the condition known as Asperger’s Syndrome (although no longer a formal clinical diagnosis), and thinking I’m just a bit different, awkward, socially inept. But each time I’ve swung back to the “Yes, of course I am on the spectrum” camp it’s been with renewed vigour. Asperger’s is all about the social hell I experience and the more I’ve read in the last few weeks, the more set in stone my own self-diagnosis is.

But I still want outside, professional confirmation, and I hope so much that it comes today.

For schizophrenia and bipolar disorder there is medication, for depression and general anxiety disorder there is counselling and/or therapy and/or medication and/or self-help guidance. But what is needed for autistic spectrum syndrome is acceptance and understanding. It’s not about a label for label’s sake, it’s also about ruling out the other things and that includes ruling out a neuro-typical brain. It’s an explanation. An answer.
I’ve not really prepared myself for disappointment today. I hope it doesn’t come.

We’re about halfway through and I’ve escaped for a wee. I was thrilled that the psychologist turned up in exactly the kind of car I was picturing she would have – and in the same lovely blue I had imagined. I’ve decided it’s a good omen. The first hour Richard was required to sit in and speak honestly about what a mess his wife is. I don’t think he enjoyed it too much but he seemed to be very helpful.

It’s all over and I’ve left the room while she summarizes all the tests and questions. I think I know how this is going to go now. She’s let a couple of things slip out, like nodding at the information about me playing schools as a child. She said it’s a classic thing that girls with Asperger’s do. I haven’t managed to eat yet today and feel very light-headed.

It’s all over. I’ve been given the confirmation I was looking for. I am indeed on the autistic spectrum. The psychologist is calling it Asperger’s one minute and high-functioning Autism the next. But the main thing is I have that official, professional corroboration I so wanted. She left at about 3pm and I took a few minutes to text and message a few people who I thought deserved to hear it first (apart from my sister in Australia, who I didn’t want to disturb in the middle of the night), and then Richard and I went for a walk on the beach with the dog.
Then I phoned my mum, and now I’m sitting here thinking about it all.

There’s a really important message in all this. I’ve read books by autistic people, books by autistic experts who themselves are not autistic. There’s a lot of talk about coping. I’ve had a good long think about whether I would want a diagnosis if I was confident and coping.

Well if I was confident and coping I wouldn’t have gone looking for a diagnosis. That’s the bottom line.

The psychologist said something similar. She said I have unusual habits, I have some big differences, but differences in themselves are not enough to call it a problem. It’s a problem when it’s a problem. And that’s the thing: it has been a problem. Well, not knowing has been a problem. Social stuff isn’t just difficult, it is like a living nightmare, things frighten me to the point of illhealth. I’ve spent my life trying so hard to be conventional, sociable, an ideal wife and mother, and it has worn me down so so badly. I am a human being but I am not the human being that other human beings are. I have some bits of my brain put together differently and that means I am not like other people. I’m not just different I’m Different.

We talked about what this knowledge would mean for the children, and agreed that knowing it was something genetic would help them to understand any problems they might encounter themselves. We agreed they may never necessarily need a diagnosis themselves but it might be some help and even some comfort to know that when seemingly normal everyday things get tricky or seem ridiculously difficult there may be an explanation to fall back on. It may just be a help to say ‘I’m doing okay considering what I’m coping with.’ There may never be a reason for any of my children to consider autism for themselves but I hope the fact that I was brave enough to go through today will mean something to them if they need it.

The psychologist looked at us after listening to us talk about our life and said ‘You’ve done jolly well to have coped with everything you have coped with.’ And it’s true. Especially now knowing why it was all so bloody hard for me. But at some point I realised I wasn’t coping and I was exhausted from trying.

The psychologist also asked me if I was relieved. I said I was. She totally understood my reasons for wanting an assessment and saw that some of my traits have been causing me distress because I didn’t understand them and was trying to hide them. I said I spend every day worrying how much my behaviour impacts negatively on other people and it will help me that other people know I am struggling against the odds.
I’d quite like those close to me to be proud of me when they think about just what I’ve put myself through over the years. And if they’re not proud I hope at least they can see how much happier this makes me and be happy for me too. Now, just knowing that I was made this way makes me feel okay about myself, and is going to help me rearrange my thinking. I’m going to be calmer and more accepting of myself. You’ll see.

Now I can think about what I want to try at, what’s worth trying at, and what I can happily ditch.

Thank you so much to the friend who introduced me to the idea that I might be on the autistic spectrum. It did always look like a country I wanted to go and visit.

And if another bloody person mentions boxes I’ll bloody deck them. Nobody puts Rachel in a box. I’ve never felt less boxy than I do today. I feel free. So nerr.


Weird Or Wired?

shutterstock_169863227It’s the final countdown to my Asperger’s assessment.

4 days to go.

I’m worrying about it a lot. It’s now become a permanent presence at the front of my mind. I’m even thinking about what I will wear – in a ‘Will that give me away as autistic?’ kind of way. I’m worrying about what my husband will say about me, what the notes my mother has written will or won’t say about me and what she’s left out, what my home will say about me, whether I will perform too much like a neurotypical person in some of the tests and not convince the psychologist I have an atypical brain. After all I have spent 44 years training myself to understand other people and blend in.

This assessment is an enormous thing for me, and my brain is thinking about my brain constantly, and it’s all very weird and difficult.

I’m so preoccupied by the event I can’t function. I’m opening cupboards and forgetting what I wanted from there in only a split second, I’m asking my husband the same question twice in five minutes – and still forgetting the answer, I’m walking around and around in circles wondering what I’m doing. And I’m tired and I’m grumpy. I’m jiggling my jaw side-to-side rhythmically so that my teeth chatter more than ever and, in an attempt to stop myself doing that because I’m worried I’m wearing down my teeth, I’m biting down hard on my tongue. I’m worrying about silly things too – really small things – as if it’s unfair to completely blame the forthcoming assessment for everything I feel.
My sensory overload problems are at an all time high right now and I can only cope with one noise at a time. I’m closing my eyes or telling people to shut up and feeling like a bad person. We watched Monkey Planet last night and I couldn’t bear to watch gibbons swinging in the trees because the movement was making my eyeballs ache and my head whoosh.

I’ve been thinking a lot about anxiety and the amygdala in my brain recently. It seems to me there are two main different kinds of anxiety in people: the anxiety triggered by stress or an event or ongoing life problems of one kind or another, and the anxiety that some of us are born with because we have an enlarged amygdala. I think I have the second kind. I think the first kind might be trained out or relieved with a combination of Cognitive Behavioural Therapy or counselling and/or life changes. But the second kind is something that we need to learn to live with and accept. When I went for my first and only CBT session I realised that they weren’t going to be able to help me. I am anxious always about everything – everything – and always have been. There was no trigger, there is no better time. It’s not all in my mind and something I can train myself out of. I believe I was born with it. It’s no use telling me I have nothing to worry about or something’s not going to be as bad as I think, because I do and it will. My fear is big and all I can do is know that I have big fear and console myself that that is the reason I worry. It helps, believe it or not.

Why can’t my brain be more like my body?
I like to do yoga (alone at home) and take walks. I can see how not feeling like exercising but doing it anyway actually works. I feel stronger, I feel glad I did it and it’s easier next time. I get a Can Do response from building up my physical strength.
But with my brain there’s no Can Do response. I push myself to do things I don’t want to do and it never gets any easier. I don’t feel stronger: I feel weaker. I feel less inclined to do things again. As I’ve got older I’ve become more anxious, more loathe to do things with other people, and generally more tired of trying. I don’t have unrealistic fear or paranoid fear: I fear normal everyday life and my own shoddy attempts to deal with each day, each activity, each event. I know how things will go, I’m not kidding myself, but I still fear them. I’m not thinking of lions or earthquakes or conspiracies. I believe I have wired fear not weird fear.

Here’s me in an imaginary CBT session:

‘You’re on your own at home. What’s the worst that can happen?’

‘The doorbell rings.’

‘Really? Why is that bad?’

‘Because I hate the sound of the doorbell.’


‘Because it means someone’s at the door.’

‘Okay… So the doorbell rings. What’s the worst that can happen now?’

‘I’ll have to answer it.’

‘So. You answer the door. Now what’s the worst that can happen?’

‘I’ll have to see someone and talk to them.’

‘And then…?’

‘And then I’ll be pissed off and spend the rest of the day hoping it doesn’t happen again.’

‘And if the doorbell doesn’t ring?’

‘The phone might ring.’

‘Why is that bad?’

‘Because it means someone’s on the other end.’

‘Okay… So the phone rings. What’s the worst that can happen now?’

‘I’ll have to answer it.’

‘I see where this is going… And if there’s no one phoning or ringing the doorbell?’

‘Maybe I’ll have to leave the house for some reason.’

‘And if you do? What’s the worst that can happen?’

‘I’ll have to see someone and talk to them.’

‘And then you’ll be “pissed off and spend the rest of the day hoping it doesn’t happen again”?’


‘So, imagine you’ve answered the door, answered the phone, been for a walk, dealt with people. It’s the end of the day. Don’t you feel better?’

‘No. That sounds like a terrible day. All those people will have stopped me from doing things I wanted to do.’

‘You worry too much.’

‘I know.’

And my biggest fear about Monday?
It’s that I won’t be told I have a brain wired in a way that explains or accounts for most or all of my behaviours. I want to be told ‘Yes, Rachel. Your brain is wired differently. There’s no way you can behave any other way. Or pushing yourself to behave differently is difficult for you. This is the way you are made. Carry on with being you and be happy.’

My husband’s said, ‘Well I can tell you that.’
Which is the best thing anyone can say. Ever.

I’m still nervous as hell though. This is my life we’re dealing with.



It’s hard to be honest about how much a flashing light bothers you, how much the sun gets on your nerves. Every one loves the sun, right?

It’s difficult to be honest about how you’d rather sit a little way away from someone because their body heat is overlapping into your personal space, their food breath is wafting up your nostrils, their laundry should have been rinsed more thoroughly (‘Is that a biological 2-in-1 she uses?’)

It’s not easy to be honest about how the sudden hug you got that threw you momentarily and made you want to pull away was welcome but you should have been asked first. How you need warning even for the very nicest of things.

It’s embarrassing to explain honestly that you struggled to get dressed this morning because your clothes felt like they touched your skin too much after a shower. You’d rather sit naked on the floor alone for an hour and maybe just write something or read something and get dressed a couple of hours later than everyone else.

It’s almost too complicated to explain honestly how you really like someone’s face and eyes and company but if you didn’t have to look at them and could have a conversation from behind the sofa or in the dark or perhaps by email you’d be able to get your words in the right order and be more confident.

It’s impossible to be honest about how you hid all day just because being yourself is something you are a little bit ashamed of, embarrassed about, and yet you need to be yourself so you don’t go mad.

The honest truth is there if anyone wants it. But you don’t share it because you know no one really wants that kind of honesty.

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