Sweetness and misanthropy

As I mentioned a couple of months ago, my little sister has had a difficult year. It's horrendously tough for everyone - you have battles and tension almost every hour of every day, and a constant worry about the future.

I'm off work for a while, partly because it was getting too hard to do bereavement work when I was grieving for Helen, and partly because I need to help out more with my sister (and it's been hard to grieve because of the situation with her as well). This morning she was aggressive and anxious and her mood would change in a few seconds. But eventually she sat down and watched me while I went outside and cut a bucket of flowers. I'm growing strawflowers for the first time, which is exciting.

She let me sit near her arranging them in a couple of vases, and she even added a few cosmos herself.

Then I made a little posy and she modelled it for me before hiding away - she's more camera-shy than me. I hope the gentle, sweet scent of the roses and sweet peas is as calming for her as it is for me. I know she gets overwhelmed by noises and people because of her autism, but she does appear to be soothed by some scents. We used to go to Nymans in Sussex, and she seemed to love the rose garden there.

In other news, only one of my cornflower seeds successfully made it into a flowering plant. It's not blue, but hot pink, which I think would have pleased Vicky as much as Helen.

Thistles are growing stronger this year. There's a quiz I do every few months, and I get different results each time, even though the questions remain the same. I often get "misanthropy" as one of my qualities, and thistles symbolise this. The association between thistles and misanthropy is written about beautifully in the novel The Language of Flowers by Vanessa Diffenbaugh, which Helen bought me five years ago. I'd never heard of it, but I read it after my ex and I broke up. The ending made me cry. As Mandy Kirkby says in her reference book, also called The Language of Flowers, "to brush against [a thistle] is to risk a sharp wound, and to tread on it is a painful experience indeed...There is no doubt as to the thistle's intention: stay away from me." She goes on to describe how the thistle became an emblem for Scotland - its defiance and durability was seen as a strength.

Describing autism

Following on, in a way, from my last post: I was interested to read some research on the language that is used to describe autism. The research was carried out by the National Autistic Society, the Royal College of GPs, and UCL's Institute of Education. If you are interested, you can read the full report here - it's nineteen pages of academic writing though, so you may need tea! I did. A shorter summary is on the NAS website here.

My personal opinions on and feelings about the findings and the research itself are jumbled and a bit raw, but I'll try to get some of it out here.

Having done such a big study (3470 respondents), it seems a shame not to have sought a more balanced sample. For example, of the parents questioned, 188 said they were male, but 1999 said they were female. That's a huge voice given in this instance to mothers, but not to fathers. Of the autistic people (as most of them preferred to be called, rather than "people with autism"), 450 were white, 25 were another ethnicity, and 27 didn't want to say. In both of these instances, I wonder how different the results would have been if the samples had been more representative of the population.

There were 2207 parents questioned, but siblings (I know, I know, I'm being very self-centred here!) were mixed up with the 380 "extended family members and friends". Forgive my egocentric bias, but really, I do think the relationship that a sibling has with an autistic person is different from relationships that aunts, uncles, cousins and friends have with them. For example, since childhood, I have understood that my sister will always need someone to care for her, and I have been aware that if anything happens to our parents, I will care for her. I will be the one who struggles (and it will be a hell of struggle) to explain to her why our parents aren't around - which will be difficult, if not impossible, given her limited vocabulary and (what I understand to be) her difficulty understanding concepts (such as illness and death, and even family). I don't have the distance of extended family members, who see my sister once a year, if that. I cannot detach my mind from her or her autism/learning disability.

Back to the research, and "person-first" phrases such as "person with autism" were preferred by professionals working in the field, while "identity-first" phrases such as "autistic person" were preferred by the autistic people who took part in the research. There was much debate about whether autism was part of a person, and whether adding a separate description makes it sound as though an autistic person has a choice about being autistic or not. I had not considered this point of view, and I can see the disparity. Personally, I prefer to say "my sister with autism" because she is my sister first and foremost, and someone with autism second. In her case, she wasn't diagnosed with brain-injury until she was a toddler, and then wasn't diagnosed with autism until she was in her late teens - so I certainly don't see her person and her autism as one and the same. It's difficult, because she doesn't have the communication skills to tell me what her preference would be, or even how she feels about her autism. All I have to go on is her behaviour - the times when she laughs and smiles, the times she strokes my hair, the times when she makes happy-sounding noises, the times when she makes anxious or angry-sounding noises, the times she pushes me away, the times she spits, bites or screams.

Finally, the huge dislike of the term "low-functioning autism" has led the NAS to drop the term - but it hasn't replaced it. I looked on the website just now and there is a section on the difference between high-functioning autism and Asperger's, but nothing on low-functioning (or an equivalent/alternative term). This itself feels rather alienating. In the research, there was also dislike of the term "high-functioning", but not to the same extent. Again, I can understand the dislike of the terms - they are simplistic, and many people find the term "low-functioning" derogatory. But my reasons for using the term "low-functioning" and occasionally the term "severe" are certainly not to cause offense.

I use these terms because so often, when I simply tell people that my sister is "autistic", the response is one of the following:

• "Cool! Is she really good at drawing?"
• "Wow! Is she good at maths?"
• "Oh yeah, I'm a bit autistic too," before explaining that they like to line their shoes up neatly/tidy up the kitchen before they go to bed/do anything that a neat and tidy person would do.

I use these terms because professionals will churn out the word "autistic" when it suits them, but then they will forget how serious my sister's learning disability is and how she is unable to ask for her needs...but that she still has needs.

Basically, I love my sister to pieces, I feel awful that she can't express herself the way I can, and I want people to make an effort with her - professionals and people she meets socially. The debate about language is an important one. It's the reason that terms that were used when my sister was young (the one beginning with "r" that I don't want to repeat, and "mentally handicapped") aren't used now. But as we find some words are not so helpful to everyone, we need to find new words that are more helpful to more people. If autism is a spectrum, there are a lot of people whose voices and needs ought to be listened to in future discussions about the language we use.

Nymans in June: Smelling the roses

I watched the first episode of The Autistic Gardener this evening. I wasn't sure about the sound of it - I was worried it would be just another entertainment programme misrepresenting vulnerable people. But I watched it, and as all of the team had high-functioning autism, it did seem to be their story and edited sensitively. There was a lovely, warm sense of humour running throughout it, and some very tender moments.

It reminded me that I took some photos with my sister (who has low-functioning autism) just over a week ago that I wanted to share here.

We made another trip to Nymans, and there was a sensory treat in store for my sister. She has paid a couple of brief visits to the beautiful National Trust gardens, just sitting in the meadow or walking up the path and looking at the narcissi and crocuses - the staff are great at suggesting what is quick to see and not too far to walk to.

At the end of last month, when it was very warm but not horrendously hot, we paid another visit on the way to Brighton. We walked through the centre of the meadow and I ran my hand along the grasses, and she copied me. She took my photograph, but decided I look better with most of myself cropped out!

Nymans has left boxes around the place with activities for children and families. I demonstrated a skipping rope, very badly, but she didn't fancy skipping. I tried to get her to play giant noughts and crosses, and she sort of joined in.

We saw all sorts of colour emerging in the gardens.

Does anyone know what this is?

We sat down in the rose garden, and for the first time she really sniffed when I asked her to smell the roses. The heat meant the scent was even stronger. So although we didn't manage to see the bluebells or the wisteria this year, sitting in the rose garden surrounded by the most wonderful fragrance was a pretty cool achievement. She seemed happy.

From a 1979 scene in Kramer vs. Kramer to Election 2015

You won't get me campaigning for a party here - my political beliefs have been a rollercoaster since my primary school teacher asked us to write letters to the prime minister to defend nurses' pay - but with an election on people's minds in the UK (and Alberta!), I thought I'd share something unusual that happened when I was young.

My parents had paid their way through university or college with housekeeping jobs in hotels, sorting post and delivering for the Royal Mail, working in shops, washing up in restaurants. Anything that would pay their lodgings. And unlike my student life in Swansea, these lodgings weren't relatively new single rooms in student accommodation, but the box room in a family's house, sharing the toilet in the back garden (I can't even imagine!) and staying in the library until closing time because it was heated, unlike their room in the freezing North East. Once they moved to London to start their careers, they still lived separately with other families, as they had before. At one point my dad was doing a three-hour commute each way, every day. One bus, one tube, one train, and another bus.

My point is, they've always had a strong work ethic.

My mum gave up her paid job once my sister was diagnosed with "brain injury" (the autism diagnosis didn't emerge for another fifteen years). She officially became a carer - although technically we all were and have remained carers to my sister - which meant she got a pittance of an "allowance" from the government. She spent six to eight hours a day carrying out a complex physical and mental therapy programme, with the help of kind, local strangers who had responded to our handwritten leaflets asking for voluntary helpers. I remember posting those door-by-door in our town.

I carried on going to school as normal, and adjusting to the change in circumstances at home. My dad had started working more weekends, which meant that on some weekends he would take me to his place of work (probably to give my mum a break from looking after two hyperactive kids) and I would have a fantastic time. Have you seen Kramer vs. Kramer? That scene where Dustin Hoffman takes Justin Henry to his new office, and his little son runs around, spinning around on the chair, looking out of the window and going "Wow!" That was me. I would make hot chocolate using the drinks machine, which was the most luxurious thing in my small world. And I would draw huge pictures using the draftsman's drawing board.

But I had no idea that the reason my dad was working so much was because we were struggling financially. That his friends at work who didn't need the extra money and would rather spend weekends with their families would give him their weekend shifts because they knew he needed them more. That the quarterly trips to the institute that organised the therapy for my sister cost a lot of money, and one national-average salary plus a tiny carer's allowance couldn't cover everything. Oh, and our local authority said that if we refused their "help" (which was to put my sister in a school for severely disabled children, a school that had a terrible reputation for its lack of care and education) then we would never get funding for any sort of treatment we wanted to try ourselves.

So I got a shock one day when the doorbell rang and our local Salvation Army officer was at the door, with boxes and bags full of groceries for us. There were huge packets of cereal, washing powder, toilet paper, and I can't remember what else. I couldn't understand it.

Years later, I asked my dad about it, expecting him to be embarrassed by the charity. He said we could never have survived that period if it wasn't for that extra support, and he's incredibly grateful.

So in all of the news, commentary and statistics that have been thrown about leading up to this election, the thing that has stood out for me is the number of people using food banks. The Trussell Trust says more than one million people in the UK were given three days' emergency food and support in the last financial year. Of that million, almost 400 000 were children.

I'm fortunate enough not to need a food bank now, but knowing that my family, who were hard-working and certainly not "poor", could find themselves in a situation where they needed donated food and washing powder to survive...well, I wouldn't want anyone to be in that situation.

And that's all I wanted to say about that.

So happy voting, whether you're voting for a particular party, a particular person, or making your frustration with the system known by spoiling your ballot paper! Here's hoping for an intelligent and compassionate government.

Hot cross buns and Easter egg trails

Happy Easter! I hope you are enjoying a long weekend and a bit of a rest today.

This week started off quite well. I had an unexpectedly free day (when I thought I would be finishing my research proposal, which I had somehow sent in a day early), so I decided to bake. I was in a baking mood after making Debs Dust Bunny's crumb cake muffins a few weeks before - I was halfway through an essay and wanted a break and a snack. I made these in 45 minutes!

So this week, I baked some fancy-pants Earl Grey and orange hot cross buns to take to my friend's in the evening. They looked nice and they smelt amazing while they were baking...but they tasted a bit meh. Maybe I needed to steep the tea for longer and use more orange zest. Also, I am really rubbish at any kind of proper bread dough - I don't have the patience to knead thoroughly for five minutes, let alone ten.

As it happens, my friend had also planned to have hot cross buns, and had bought some from the supermarket and from Konditor and Cook. I was bunned out by the time I left! I picked a primrose from his garden when I left - it had such a delicate scent.

My friend gave me some lemon chiffon cake in lieu of an egg, which was much appreciated later in the week. Coincidentally, I noticed a Twitter friend had just been to a Konditor and Cook piping class. Becs (who I met at the Depressed Cake Shop in Bromley) came away from her class with a Curly Wurly cake and two trays of brownies!

For years, I have wanted to take my autistic sister on an Easter egg hunt. She has never been on one, and there is not much that she is enthusiastic about, but chocolate is one thing. She was in a good mood on Good Friday, so we went to the Red House in Bexleyheath, which was doing the National Trust egg trail. The house is gorgeous - it was created by and for William Morris, in collaboration with his architect friend, Philip Webb. Fortunately, the grounds aren't too big - I think my sister would have been impatient otherwise! We went around with our piece of paper and I asked her to stamp the paper every time we came across a stamper along the way. She got a bit fed up of doing it towards the end, so I finished it for her. After a tea break in the cafe, we went back to the start of the trail and I asked her to give in her completed trail. The lovely ladies there (I don't know if they were staff or volunteers, but they were so friendly and a real credit to Red House) went to get her prize and one of them said, "Have we got a blue one?" because my sister was wearing a blue jacket. My sister doesn't often look pleasantly shocked, but she was upon receiving her egg! She obviously thought that the trail was just me trying to get her to do something educational/nature-based.

The next day, we went to Hall Place to do their trail. Theirs was much more spread out - I saw a few little kids crying because they'd gone around once and hadn't found all of the letters (which spelled out a phrase)! My sister also got fed up halfway through, and so I had to run around in the drizzle and finish it off for her so she could get her prize.

I took a few moments to appreciate the spring beauty in the gardens - lots of pretty heather, magnolia, and the start of apple blossom.

 There were also strong-scented hyacinths and narcissi, and cowslips in the open and nestled amongst the hyacinths.

And here are some Easter leftovers: too short stems of forsythia, scented 'Double Smiles' narcissi and 'Atlantic' muscari, all from the garden or greenhouse.

I love how the forsythia and narcissi are the same vibrant yellow! Perfect partners for Easter.

Bluebell Monday, Paddington, and Winnie the Pooh

Today was a long overdue good day. We had plenty of blue Mondays (and Tuesdays and Wednesdays...) over Christmas and New Year, with my autistic sister being very poorly and aggressive. She came back to London yesterday, and she is much chirpier. I took her to see the Paddington film, and it's the first time in years that she's sat through almost an entire film. Usually she wants to leave after half an hour. (The film is wonderful, by the way - really fun and funny, with a sweet message about diversity.)

We watched The Great British Garden Revival in the evening, and she was transfixed by the footage of bluebell woods. Blue used to be her favourite colour, and although she never asks to go anywhere, she does seem to enjoy being around nature. I often point at things for her to look at, but she doesn't always want to look. I also show her nicely scented flowers to smell, but she doesn't really sniff them. But I am hoping that a bluebell wood will surround her with beautiful blue flowers and a sweet scent, that she will notice and enjoy. So I'm planning to take her to one in the springtime.

I'm also hoping to take her to Ashdown Forest (Winnie the Pooh country) one day, although that will probably be more fun for me than her! I loved A. A. Milne's  stories as a child and even more as a teenager. As well as seeing the polar bears in Canada for my 30th birthday, I also saw the statue of Winnie the bear in Assiniboine Park in Winnipeg: the bear who was smuggled to Britain and who inspired Winnie the Pooh.

As other bluebell lovers chatted on Twitter after today's Garden Revival episode, the lovely Sara Willman of My Flower Patch sent me some bluebell photos she'd taken a few years ago at West Woods in Wiltshire, and I asked her if I could share four of them here. She agrees that it will hopefully be a wonderful sensory experience for my sister to visit a bluebell wood. We can all enjoy Sara's photos until the bluebells make their appearance in a few months!

Nymans in May

I am sure there are others like me who wanted to visit Nymans after seeing Chris Beardshaw's BBC Four programme about it recently, as part of the British Gardens in Time series. The shameful thing is, I go past it on the way to Brighton if I visit my sister by car, but for some reason 'Nymans' just didn't sound like a garden to me, and I was never curious enough to find out what that brown sign on the M23 was all about.

Well, I visited it a few weeks ago, and I was glad I did! It's a wonderful place - there is a wildflower meadow with oxeye daisies, woods with fantastic carvings, a beautifully colour-coordinated allium, scabious and astrantia bed, a rose garden. Dotted around the gardens were some dainty aquilegias and perfectly spherical alliums - and the bees loved them.

There were a few peachy beauties which caught my eye: the 'Crown Princess Margareta' rose, and the 'Souvenir de Maxime Cornu' tree peony.

My favourite part was the most incredible wisteria-covered walkway. I had no idea wisteria was so scented. The walkway has now made it into my fantasy garden! There was also wisteria going up the house, and an unusual white wisteria near the secondhand bookshop.

My sister doesn't tend to look at things if you point to them or smell flowers if you put them under her nose, but I'd love to take her here one day and see how she responds to the scents. There are many unhelpful generalisations about autism (I would recommend reading 'The Reason I Jump' if you want an insider view of autism), not least that people with autism don't like sensory experiences. It's true my sister doesn't like being in a crowded, noisy shopping centre, but then again, who does?! But she does seem to enjoy the sensation of walking on a beach or in a park, hearing the sea or the birds, seeing the colours and the gentle movements, so I think she would enjoy a trip to Nymans. I'll post again if I manage to take her!