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Wow it’s nearly March and approaching hot weather. I hate hot weather mainly because I have self harm scars on my arms and legs. This means trousers and long sleeved t shirts in even the hottest weather. Also I’m quite fat and don’t suit summer clothes anyway. So I cling to my hoodies and jeans as long as possible and adding on a nervous sweat problem, summer is not great. Summer also is when everyone goes on holiday – so my parents are going to Italy, one of my carers is going to Cornwall another to Devon. It doesn’t half mess up my rota and you know what a change in times means to someone on the spectrum. I grudgingly admit people need holidays, just bear in mind what you’re doing to me.

Not that I can fault my carers apart for the need for holidays. I have 16 hours support a week half by Mind and half by the NAS. So some days I’m mental health, others I’m autistic. My weekly routine is pretty strict. We pretty much do the same every week, apart from one Tuesday a month when we start early for the Clozapine clinic. Monday is shopping and bed sheet changing, Tuesday if the weather is nice I like a round of golf. If the weather’s not great like it has been this winter we go into town for shopping and have even done a museum. I love seeing all the beautiful things and also sharing my knowledge with someone else i.e. my carer. This week we are hoping to do the geology museum, however I also need to get mum a Mothers day present. Wednesday is my least favourite day – shopping and flat cleaning. I’m so bad at cleaning I must confess my mother and father come about once a month to give it a good scrub down. Thursday is cooking tea with a carer’s help so I do something a bit more interesting. So I get a lie-in on a Thursday. Then Friday we pick up some lunch and dinner from the shops then have a half hour golf lesson. Also, once a month Mind provide a carer for four hours on a Saturday.

So that is my week. Most of my care takes place in the morning so I have afternoons to read, listen to music and play on my ipad. Probably the best thing about having support is the company. They are guarded about their private lives but I do get to find out in particular about the trips and things at NAS Mildenhall. And one of my support workers comes from Newmarket and is dead into horse racing so I hear a lot about that. One male carer who doesn’t come that often is into the same type of music as me so we always have a good chat. In fact most of my carers are into music. Sadly of the Ed Sheran variety, but it’s a start.

I don’t know what my life would be like without carers. I would find it very difficult to do anything at all but stay in bed. My carers encourage me. They are used to hearing me say that I feel nauseous and very anxious. They don’t disregard it but just say stick to your routine and let’s get on with it. I sometimes feel cross and worry that they don’t understand how bad I’m feeling, but actually it’s usually the right thing to do and I’m pleased with myself when I’ve managed to do things.

Sometimes I worry that I don’t make the best of my team because we often find by lunchtime that we’ve done everything but we watch the news together and I really enjoy having someone to share that with. And I do worry a lot about them getting bored. But when I say this to people I know they tell me that it isn’t my job to entertain them. When I first had carers I had this one who was all about filling all the time and doing activities non-stop. I found this regime so awful that I became suicidal because it was too intense. She had to stop seeing me because she was ill. My new regime which I’ve had about two and a half years is much happier. Each person brings their own personality which provides variety and I wish I could buy them Christmas and Easter gifts to say thank you. So I just want to say thank you to you all for making my life a little more bearable.

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Written by James Sheard
Volunteer Coordinator at Total Voice
Cambridgeshire and Peterborough

How I discovered women on the autistic spectrum was actually a thing.
Growing up in eighties and nineties autism in general wasn’t really a thing. At least not in my life.

I didn’t really hear it is a word till I was almost an adult, and my mother having retrained as a primary school teacher added the role of SEN Coordinator.

“I sometimes wonder if all men are autistic” she’d say. “What even all the men in our family?” I’d reply, “especially all the men in our family” she’d immediately respond.

Now you do have to take everything my mother says with a pinch of salt. And when I say a pinch of salt, I actually mean enough salt to generously cover a large portion of fish and chips with a little spare to throw over your shoulder for good luck.

She wouldn’t have dreamed of actually suggesting that all the boy kids in her school should be diagnosed as being on the spectrum.
However this did probably contribute to two factors that didn’t help my understanding of the condition.

1 –  It convinced me that half a dozen traits most associated with adolescent or socially awkward men meant they probably had autism.

2 –  It took me till I was 30 to actually knowingly recognise someone as both female and being on the autistic spectrum.

The traits I believed were indicators of autism included:

A –   Playing lots of computer games.
B –   Not spending much time outside.
C –   Not spending lots of time with friends.
D –   Not going to loads of parties.
E –   Not having a girlfriend.
F –   Not wanting a girlfriend.
G –   Having controversial political opinions.
H –   Not being constantly interested in conversation or gossip.

Of course, in truth most of these were just things that the obsessively socially ‘on point’ female half of my family (my mother, my sisters, my grandmother), found irritating about the not quite as bothered by social rules, male half of my family (me, my Dad, my Mum’s brother etc.).

It is also quite apparent that many of these factors could apply to any 14-25 year old, going through puberty. Add the fact that at least 50 percent could at that stage of life, have applied to me plus how many of my peers those factors also were true for, and you could see how self-reinforcing the idea that autism was just ‘maleness’ was.

My views started to change slightly when I moved into social care. I began to realise to those who were genuinely on the spectrum that unlike many of the traits above, autism was a permanent and life-long challenge. Where a change in environment or routine wasn’t simply an inconvenience but something that could cause an individual emotional and physical stress.

However nearly all the service users on the spectrum who I worked with were males with profound learning and physical disabilities. This meant with most of them their other care needs were the priority, and because of their limited capacity, it was hard to properly discuss how their autism affected them. Whilst of course reinforcing the male dominated stereotype of the condition.

In the four locations I worked, I can only remember one female service user who people talked of as having autism, and as we were in different parts of the service I spent very little time working with them.

In 2014 I became coordinator of the Speak Out Council and therefore responsible for supporting the Speak Up Spectrum leader to run her forum for people on the spectrum. Through the group I also met Rachel.

Rachel’s story is told beautifully and eloquently in ‘A Girl Like Till’y which I highly recommend to all who wish to understand better what growing up with autism could be like. I will also leave it to our Speak Up Spectrum Leader to tell her own story, as she does it far better than I will be able to.

However it was a privilege to facilitate the group with both, and to discuss autism from a female perspective, with two women I could converse with at an academic level about how well the world supported and understood their condition.

When I thought back to the people with profound learning disabilities I had work with, their perspective helped me understand how to break apart the learning disability from the autistic spectrum diagnosis. And why it was important to separate the two.

They also of course helped me to see how stupid it would be to have ever seen autism as just another word for a certain traits associated with men.

And finally why it is so important that women on the spectrum, share their stories with the world.

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Gosh! It’s been a while. Sorry for not blogging in a while but what with pre-Christmas and my parents moving house everything has been quite busy. Did you survive? I just about made it. My niece was unwell on Christmas Day so plans got changed a bit which I found stressful. So Christmas Day was rather muted, however Mum made up for it on “new year’s eve” with a full turkey dinner. I also did a jigsaw which my dad is currently battling with. But man do I get nervous before Christmas. I was so stressed that I couldn’t eat the week before and sleeping was difficult. I always want Christmas to be special and go into serious worry in the run up to the big day. My parents’ new house is big enough to fit us all in so that was interesting – I got the sofa bed with a lovely mattress topper in a spare room which is currently pink (my Mum is looking at colour switches as I write).

One thing about Christmas is you get out of rhythm and when you get home to your own flat you feel absolutely lonely. Every year I get fewer cards, although my family are extremely kind with loads of gifts. But Christmas does make you think and reflect. Why don’t I have friends? What happened to the ones you had? I have always struggled with friends. Yes I had them but they did a lot of things that excluded me especially as we got older. I think the most upsetting was when my favourite band James came to town and I asked a few people if they wanted to go. But each one was “I’m going with someone else”. No tag along just blank. I look back and think did I really have friends or just people I chatted to. I went to the gig on my own anyway and ran into them – I hope they felt embarrassed. I’ve since been to quite a few gigs on my own and to be honest it’s sometimes easier than compromising.

But I’ve always had problems with friendship. I think the playground is the worst, the “I don’t like such and such” or “she boring”. I’ve certainly been accused of being boring in my time. As you get older it gets harder although judgement goes right through the years. I always felt I was, to quote the song “amongst friends but all alone”. I never felt truly appreciated for my wit and intelligence. People tend to address me as if I’m a little slow. My “group” in high school were pretty intellectual, 2 went to Cambridge. They accepted me in school but would not hang with me out of school and they were certainly too swotty to go to gigs. Over the years these friends disappeared and now I’m left friendless (with a great cd collection!!!!).

By the way “Happy New Year”. I hope you have a great one. I have deteriorated over the last year but am hopeful that with help I can get stronger again.

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Arghh! Oh my God!! Christmas is fast approaching. I always worry I’m going to be ill and
it’ll be a disaster. So much packed into such a short time and you need to be on top to manage
it all. So big pressure. What makes it more difficult than usual is that my parents are moving
house in a week and half. They are moving out of the city and into the country. I will no
longer be able to walk over there, so I’ll need picking up and traffic where I live is pretty
busy especially close to Christmas. The new house will be a change and a challenge but
having seen the house once I think it is going to be relaxing and cosy. It also means we can
all stay for Christmas, me, my brother, sister-in- law and niece. This is daunting. I have a
bedroom to escape to but it strikes me it is going to be full on. We are going out for
Christmas lunch which is a mega stress but as mum always says “you don’t have to eat
anything”. Present wise I’m pretty sorted having raided Boots a few weeks ago. I just need
odds and ends now which I’ll pick up in mid-December.

This week I think the head of outreach from Mildenhall NAS is coming to see how things are
going with my carers. I don’t know if it is Tuesday and he will be accompanying me on a
round of golf or Wednesday when he might find himself doing some light cleaning!! I’m
trying to work out what to say to him. I think the best thing is honesty and the brutal truth,
since I feel my life is deteriorating. I wish, at the moment, I could curl up in bed and just stay
there, but one has to keep going. My parents also have a “carers’ assessment” on Friday. I’m
not sure what will come from that since they seem to happen then nothing happens. I’m also
waiting on some kind of assessment to work out how best to go forward and basically what
can be done.

Today I’m particularly nervous because my hot water gave in yesterday and to fix it you have
to go into the bin store which is horrible. I’m scared of all the germs I could have picked up,
my stomach is already complaining. This was on top of the fact that my bathroom light bulb
failed on Friday. So I had my parents round both days trying to fix it. We did manage but in
terms of stress the damage is done. I think I have till Wednesday before I can give myself the
all clear and then to top it all off I’ve got the doctors on Friday and more germs. Eating has
also become more nerve wracking because I’m convinced I’ve poisoned myself too. This
makes evenings in particular very stressful. – Man! Life is complex! I don’t know how to
manage but at the moment I’m just, and only just, getting by.

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I’ve written a few blog posts now, but I’ve decided that now’s the time to tell it like it really is.

Germs, germs, germs – winter brings them and I enter psychotic germ fear. Every little sneeze, every tickle and it’s “god, I must be ill”. The fear is like a brick wall because there is no escaping one’s fate and feeling of doom. I’ve been an illness phobic since I was nine when I had food poisoning but this year my fears are worse than ever. I hate the loneliness of no one grasping how awful this phobia is, the all-consuming fear. Yes I know there are treatments. I’ve done CBT more times than I have fingers. I’ve had medicine and their accompanying side effects. I’ve even spent a year in a hospital ward doing “flooding” and nothing works, I just get more anxious and frightened. And that’s it fright/fear how inescapable germs are. I hate it!! I hate life because of it. I get nervous even with my parents and the outside world is a nightmare. Obviously going to the doctors is a huge thing but even letting a carer into my flat freaks me out – are they ill? Have they just been ill? Are they germ magnets?? I get so frightened my left arm goes numb and I fear having a heart attack.

I used to do things. Enjoy the cinema or theatre, going out to eat, going into town, trips to London whilst now I find it hard to go to Sainsbury’s. But you have to force yourself and fight against your life shrinking. My life has deteriorated over the last few years and I’m desperate for help. I don’t know how many people on the spectrum suffer things like this. I don’t think I’m alone. I know the depression is linked to autism in women, so although bad news at least there are others like me. One thing I find is that I never learn from situations, everything is always new. Just cos I made it to the supermarket or golf course one day and coped my head doesn’t go “ok you did this yesterday and you were fine you can do it again”. No, my head goes “anything can happen, bad things can happen”, thus the anxiety gets worse and what in the end was routine yesterday is now a whole scary, nervous making activity.

And to top it off, Christmas is coming. I find Christmas hard. Family members bring germs, will I be ill for Christmas? (I had a bad cold last year), will I choke on my lunch. This year because my parents are currently moving house we are going out for Christmas lunch – mega stress alert!!!?? I’ve been to the restaurant a few times so I know it but I just get scared. The best strategy I can think of is getting up early so my stomach is rumbling with hunger when I get there and feel relaxed enough to eat. Anyway we all have the thing about parents moving house. I’m actually looking forward to it cos the house is lovely and it’s not too far from my flat. At the same time I know it’s going to have an impact on my routines so that will be difficult. All I can really do is keep on listening to rock and roll and praying with all my soul for relief from this truly awful condition.

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I made it! I turned 40 last week. It has been over the years a bit touch and go, but there I was surrounded by cards, presents and balloons. The day itself was pretty much my usual one, then in the evening people started ringing and my parents came over to the flat. My big present is a new set of golf clubs, which are on order as I write. The actual choosing of the clubs was quite difficult but I think I chose the right ones. I have been worrying all week – did I order the right grip? Will they make it the right size? Will these clubs improve my game? Anyway they should be ready soon, I can’t wait!!

I went out for a birthday meal with my family at the bank holiday. I just had steak and chips but the rest of the family went seafood mad. Even my 10 year old niece tucked into a bowl of mussels. I was very nervous so I didn’t eat much and the sauce didn’t taste very nice. Fortunately it came in a separate jug so I just didn’t eat it. But the steak was really nice sauce or no sauce. And I’m so glad I had a celebration with my family, even though it was very daunting.

Then with my niece trotting along, we went to a garden with the National Garden Scheme during the Garden and Health Campaign. Every year garden owners open their gardens to the public. This year the campaign was about getting active in your garden and we went along to a garden in our area earmarked by the National Autistic Society. Thus we found ourselves at Wild Rose Cottage in Lode, Cambridgeshire. There were actually few roses but there obviously had been some pretty vigorous planting because it was just packed with plants, sadly few flowers. The garden was divided up into “rooms”, my favourites were the veg patch (a huge pumpkin almost ready to be picked) and a brilliant pond which looked packed with wildlife. There was also a lovely summer house where you can imagine sitting with a glass of wine and a good book.

I do love a good garden. As I have gotten older I enjoy a good nose round a garden be they National Trust or National Garden Scheme or just open to the public. I’m particularly keen on Rose Gardens and cottage gardens. I like flowers that attract wildlife and I like my planting a bit haphazard although I’m sure most of these gardens are well planned. As for roses – I do love a Rose!! The other day I went to a National Trust property called Anglesey Abbey. I go there a lot but don’t necessarily stop at the more formal gardens. Anyway we decided to take a look at the rose garden, which was lovely. I love the smell and the gentle beauty of the flowers. These days I don’t groan at yet another garden. I have learned to appreciate how great they are, even though because of my OCD I’m unable to get my own hands dirty.

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My support worker and I were outside our local Asda when we noticed a cat carrier box, as we are both cat lovers we went to have a look and what was inside? A tiny 10 week old kitten who’d just according to the owner who was with it had just had its first injection. Immediately we started talking about our cats when they were kittens. In my mum’s book “Tilly” cats are featured, mainly Gilbert who my parents had before me and my brother where even born. Gilbert died when I was 11 years old and I was devastated, however, he was soon followed by Flo who had a completely different personality. Flo died 20 years ago and I still miss her.

So my first experience of pet ownership was rather accidental as was the fact that my parents had a cat at all, they are not natural pet owners. But once we got passed the tail pulling and general mauling of Gilbert when I was small, Gilbert soon became my best friend. Once Gilbert sat on you, you knew you were sat on. He was a big tom cat, all black but still in my eyes adorable. Gilbert was a bit of a wimp and was rather bullied by other cats. He very much did his own thing, going out a bit then spending the day asleep. He enjoyed being stroked and had a quiet purr, he also “padded” before he sat down. This drove my aunt who is a lot younger than my mum to the edge of madness. He would do a good five minutes before he could settle. He was also the subject of many of my early art works and well reported on in my “what I did at the weekend” book on a Monday morning. Gilbert was my first experience of that kind of unconditional love but was also my first major death. I could cry for Gilbert many years after he had gone. He was a very important part of my life and very wise. I used to tell him everything and he would make me feel better.

Flo on the other hand was in many ways what Gilbert was not. She meowed and purred loudly, making her presence known. She was small and all white and was bossy. If we visited a friend in the street Flo would follow and meow outside their house to be let in, even if they had a dog. We had to hide when we went out to outwit her. She hated not to be where the action was and would throw herself against any closed door demanding to be let in.Unlike Gilbert she was friendly with other cats and enjoyed nothing more than sitting with her friends on a garden wall. But Flo was highly strung. She would “nuzzle” into your armpit as if getting milk and in later life developed an OCD thing which left her bald on her stomach through constant licking. I think it must have been hard for Flo. We got her just as my problems started to be serious rather than just “well that’s interesting”. She witnessed it all and even saw me self harm which must have been destressing for her. Flo only lived to 12 as opposed to Gilbert’s 15. In some ways she was a damaged cat from the start taken from her mother too young, nearly dying of cat flu but how I loved her. She again was my best friend like Gilbert but was so entertaining and loveable.

Having these two pets enriched my life in so many ways. They say pets help with many different illnesses and disabilities and I would definitely agree. Ok I haven’t had a pet now for twenty year but it’s not for want of trying on my part. We’ve moved around and my flat now doesn’t allow pets, not that I think I’m capable of looking after one. I do have a carer from the NAS who tells me about her cat which I love hearing about. So maybe I just have to remember Gilbert and Flo and cling to their memories – the happy times, the snuggling times. Maybe they will always be the only ones who ever understood.

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I survived! My parents went away for 2 weeks and I got through it. I had carers every day, sometimes twice and what with them and pure guts I got through. It was weird though! Drinking gave me the burps (unlike normal) and I completely lost my appetite. I kept having moments when I thought I was going to vomit. Which is normal but this was worse than usual. Ideally I just wanted to stay in bed but my carers took me out on trips including “Build a Bear” and the Botanic gardens. My most nervous moments were the few days before they came back when my anxiety and panic attacks reached new heights. But pretty much the moment I knew they were back I started to feel better. It’s taken a good week to start to feel normal again i.e. my usual anxious self but I did make it and that’s a great feeling. In most ways I’m glad that I let my parents go on holiday. Yes it is a challenge but there is nothing like a recharged and relaxed carer. So now we are back to normal apart from one of my favourite carers has taken the second week of Wimbledon off to watch tennis and I’ve lost my rota so I have no clue about who is coming on Monday.

As a treat for surviving their holiday my parents took me to see historian Lucy Worsley talk about Jane Austen at a history fest at Wimpole Hall near Cambridge. As I may have probably said before I’m a bit of a history fan and combine that with a favourite author, Jane Austen, and you have a match made in heaven. I have actually seen her before talking about George II but this time I queued and got my book signed and my mum took a photo. I did embarrass myself slightly by gushing all about my favourite topics in history. After reeling off my passion for Russian history and Queen Victoria she looked a little surprised when I said my latest read was a history of ancient Egypt. The whole thing was quite nerve wracking, sitting in a hot marquee for an hour with worries of needing the toilet on my mind. But she is a great speaker – funny, easy to understand and not afraid to be popularist. But just to have met her and tell her how much I enjoy her work was a real privilege in fact maybe I should have told her to do something on ancient Egypt next time!!!

I have also been looking at ways to expand my life. There is a project named Red2Green in an outlying village which works with autistic people. My mum already knew the manager and I thought I was going as a celebrity having had a book written about me. Anyway it soon became apparent they wanted me to sign up to something and my mum, who accompanied me, is desperate for me to improve my computer skills. So pretty soon I was enrolling for next term which starts in September. As you can imagine I’m in two minds. Firstly my precious routine, I am very worried that it will interrupt this – when will I play golf, read or listen to music. Secondly, germs, it has taken me four days to settle after the visit. I am scared stiff of germs and being around people means germs. I have got to fight this fear because all the people we met were lovely and I can see myself maybe being part of the community. Everyone I’ve told about it is very enthusiastic, so roll on September and refreshed computer skills!!!!