Happy Easter!

Gosh a triumph!! I managed to go out to a local pub for Easter lunch. I had a burger and chips which is always touch and go cos burgers can be a little dry. My mum had lamb roast dinner and my dad had fish. When we arrived we were the first there and I thought this place isn’t very popular but within 30 mins the place was packed. They still managed to keep up a brisk service and we all agreed we’d go again preferably on a day when steak is on the menu! But what a palaver before the trip. I have been hugely anxious and am getting more anxious cos my parents are going on holiday. They have decided to pay for extra care so I’m hardly on my own, which is positive but maybe a little overwhelming. And what falls slap bang in the middle? My annual trip to see “Rumours of Fleetwood Mac” – the top Fleetwood Mac tribute band. I go every year, this is something like my 6th time. I must say I enjoy them very much, they play all the hits although it is stressful going it will be more so with my parents away. I don’t begrudge my parents having a holiday, in fact it is very important for their wellbeing it’s just that I find it very hard – I’m so scared. For company and support at Fleetwood Mac my support worker from the NAS, Anthea, is coming as she has the last two years!!

Talking of the NAS I have been pleased and tickled about the society collaboration with Playmobil for autism awareness week. I love Playmobil. I still have a collection of Playmobil motorbikers on top of my cd towers. My first Playmobil was a pirate with row boat and lantern which my mum bought for me as a Friday treat, and it started from there. Playmobil from then on was my favourite toy. I loved the fact that you could get sets of different occupations. I went through phases sometimes I preferred the camper van, others the medical set. I remember loving the motor racing set and the Arctic explorer station.

As a child I was very lucky in the fact that we went to France a few times and of course France had better Playmobil than Britain. I would get the brochure and scour it for hours but there was no better treat than going to Paris, to Galleries Lafayette toy section and working out what treat I could buy. But you could also get great Playmobil at Supermarkets and local toyshops in Normandy where we often went because my dad’s subject is William the Conqueror. I often played with my brother even though he owned no Playmobil. I used to go on voyages with my fishing boat while my brother set up a stock exchange and free market economy. He is now in banking.

I just talked with my Aunt and I said I was blogging about Playmobil and she agreed it is the best toy. Out of all the people I knew as a child I had the biggest and best collection of Playmobil. I used to get very upset when people didn’t play properly with respect for either their own Playmobil or mine. Everything was kept immaculately although I did mix up my sets. I just had huge boxes full. I think we must of driven mum to near nervous breakdown when we took over the sitting room with huge sprawling games, however when we moved when I was six we had a playroom but mum would still get a little cross when she couldn’t hoover for weeks. So thanks to the NAS for reminding me about Playmobil (I do still have dreams about playing with it). I would say it was a great toy for us “high functioners”. By the way the picture of me with sheep is an Easter trip to Ickworth House especially to see the lambs.

A weekend of stress but also triumph when I feel proud of myself.

 

 

Carers Matter!!

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.

How I discovered women on the autistic spectrum was actually a thing.

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.

To find out more about Total Voice and the work they do please see here. 

 

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.

Keepin’on keepin’on

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.

Chris Packham: Asperger’s and Me – BBC2 documentary

Watch on BBC iplayer. Available till the 22nd November.

For most of his life, broadcaster and naturalist Chris Packham didn’t tell anyone about the one thing that in many ways has defined his entire existence. Chris is autistic – he has Asperger’s Syndrome, which means he struggles in social situations, has difficulty with human relationships and is, by his own admission, ‘a little bit weird’. But what if there was a way of taking away these autistic traits? Would Chris ever choose to be ‘normal’?

In this film, Chris invites us inside his autistic world to try to show what it is really like being him. He lives alone in the woods with his ‘best friend’ Scratchy the dog, but he also has a long-term partner, Charlotte, who discusses the problems Asperger’s creates in their relationship – she describes Chris as being sometimes ‘like an alien’. Chris experiences the world in a very different way, with heightened senses that at times are overwhelming, and a mind that is constant bouncing from one subject to the next.

Growing up at a time when little was known about autism, Chris wasn’t diagnosed with Asperger’s until he was in his forties. With scientific advances offering new possibilities to treat his condition, Chris travels to America to witness radical therapies that appear to offer the possibility of entirely eradicating problematic autistic traits, but he also meets those who are challenging the idea that autistic people need to change in order to fit into society. Confronting this deeply personal subject with brutal honesty, and reflecting on the devastating struggles of his adolescence, Chris explores the question of whether he would ever want to be cured himself or whether, ultimately, Asperger’s has helped make him who he is today. 

Telling it how it is

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.