To many people I’m the bubbly, friendly, excitable and somewhat eccentric lady who knows how to let go and have fun. I have plenty of friends, I’m a gifted writer and I’m talented in the arts of pickling, preserving, relish making and cross-stitch. I love to sing, read, live, love and laugh.
To my WI group I’m the new girl; the one who made an immediate impression with her slapstick approach to life, her willingness to laugh, her ability to make yummy things and her passion for Doctor Who. I’m affable, compassionate, very happily married, talkative and laid-back. I will smile at and talk to anybody. I’m exuberant, adventurous and will try anything once (unless it has tentacles).
To other people (fortunately very few) I’m aloof, self-centred, snarky and thoroughly unpleasant. I like to go out of my way to upset or ignore people and am something of a snob. I have no recognisable sense of humour and I seek to be as hurtful as possible. To quote one of my detractors, it’s all about me and I “suck at sympathy”. People will react negatively to me or suddenly turn on me verbally, and I won’t understand why.
The plain fact is, of course, that I am autistic. I struggle with many social situations and have learned not to speak until I’ve listened to a conversation for about half an hour – unless I’m with people that I know really well and then I can just be myself. I like being myself: I can have my friends laughing until they have stitches within moments because I’m not afraid to be silly; I can talk science fiction and cross-stitch until the Tribbles come home. I wear bright, bold colours and I combine some clothing items in ways that others wouldn’t expect – and I manage to make it work. I dare to be different, to stand out from the crowd.
Of course, being autistic also has its down side. I’m terrible with money, terrified of numbers and the quietest sound is amplified to the point of annoyance. I can tell you exactly which flat across the road from my house has the rattling fridge. I can’t stand to be barefoot and have to wear socks all the time. Any minor upset will have me curled up in a ball in the corner of the sofa rocking, fingernails biting into my palms and screaming and crying until my throat’s raw. I’ll cross roads with oncoming traffic if I’m alone. I am generally a danger to myself because my perception filters are slightly out of whack.
Just lately there have been spurious claims abound that children – especially girls – “grow out of autism”. In fact, until recently, even my father believed that “autism only happens to boys”; therefore he was shocked by my diagnosis.
Both of these myths need to be put to bed – permanently. Nobody “outgrows” autism; some people find coping mechanisms and others don’t. Autism is, apparently, less likely in girls and not as severe as it can be in boys, but is that true?
I have become so frustrated by accusations, untruths and misunderstandings that I began an online community on a different blogging platform and am considering creating a blog specifically about autism here too.
Autistic adults exist. I’m fairly certain, anyway, that I am not a figment of my own imagination.
I am a parent of a child with autism just trying to do the best I can for him. Its always insightful to read an adult’s perspecitve who is with living with autism.
Thank you so much for stopping by. As well as being autistic I have epilepsy, and it’s always nice to know that my words on these subjects are helping others
Your words certainly do help me! There’s still too much ignorance and misinformation about autism.
This is an excellent piece, so well written. It is important that you speak out and help people understand.
Great post.
Am thinking of writing a post myself, as my son became an “adult” at 16 – but there didn’t seem to be any help – or maybe need to go seek it out then.
My sister’s BFF works with a foundation that deals with autistic children. sadly, due to budget constraints, it lost its governemnet subsidy and has to depend now on private foundations and donations, which ,as we very well know, are very inadequate. I hope you will be heartened to know that the founder is also autistic. Everyone had almost given up on her, but her mother persevered and taught her herself. This is now the “system ” that they use to help the children.
I think you are a brilliant writer and I always enjoy reading your posts. I hope you continue to write about being an adult woman with autism. I don’t think we hear enough about what it is like being a girl or a woman with an ASD so your insight and experience is really welcome. Debb
I’m sure that somewhere, someone has written a psychological treatise on how reluctance to embrace tentacles inhibits full social development. Since you obviously haven’t heeded the Call of Cthulhu, you may want to approach tentacles slowly and read pro-tentacle literature like Pharyngula (http://freethoughtblogs.com/pharyngula/).
Thanks for your occasional glimpses into the sometimes wonderful world of autism. The difference in perspective is jarring for some people.
… And now I’m mopping tea out of my laptop; thanks for the giggle!
I suspect the people who seem to grow out of it are the ones who are only mildly on the spectrum in the first place, and as you said, find appropriate coping mechanisms.
My niece is incredibly unlikely to “grow out of it”. She’ll be 9 this year and in September will go full-time to the specialist school that she’s currently attending 3 days a week. There’s no way on earth she’d cope in a mainstream high school. I honestly don’t think that in 7 years time, she’ll be capable of sitting GCSE exams (if they still exist in 7 years). Not because she’s not clever enough, but because I can’t see a way of them writing an exam paper in such a way that she’d be able to answer it – because it would have to make her want to answer the questions. I may be wrong; it may be that when she changes to attending the specialist school full time, that her ability to interact with the world becomes radically different, but right now, if she’s had too much imput at school, she goes home and gets into bed, and if you try to get her to do something she doesn’t want to do, or she’s tired, she’ll pinch (very hard – it’s not just a pinch, she twists at the same time). And it’s very difficult for us to understand what she does want, because she has chosen to not talk.
With the advent of facebook, there are people posting stuff about all sorts of different awareness campaigns on it and my family are regularly posting things relating to autism. But I don’t see how that will actually affect people in the real world. It’s one thing reading about how someone lives their life in one way, but completely different to actually meet someone with that particular “label” in real life.
Your niece sounds very like myself. Due to lack of diagnosis in my day (that makes me sound old lol) I had a very difficult time at school. I was bullied, couldn’t grasp maths, sciences or geography (still can’t) and had a tough time sitting my GCSEs.
I agree with you about the autism “memes” on Facebook; some of them are innaccurate to the point of making me want to put a fist through my laptop. Only a person with autism knows what it’s like – I think it’s far more beneficial to write about it, as no two autistic people are the same and there are myths that need to be thoroughly squashed.
It’s not so much the “memes” (I’ve not seen those) as the “awareness” images, all of which state things like “I love someone with autism” or “I love an autistic child” or “autistics are people too” or other such trite statements. Which I get fed up of seeing, especially when it seems like a family member is sharing or liking or whatevering a new one each day.
I think you’re probably higher functioning than my niece. She doesn’t speak much and when she does vocalise, I think we understand only about 20% of it, and unless there’s some major improvement in her behavioural capabilities in the next few years, she’s very unlikely to be able to cope living on her own, and is probably going to have to be in some sort of residential set up.
As I try to look at the world for a moment through my son’s eyes thank you for allowing me to see how you see it.
Reblogged this on Everything Under the Sun and commented:
Everyday as we have small successes or big challenges I try to get myself to stop and try for a moment to look at the world as Johnny is seeing it. “The Rose Wine Lover” does a brilliant job in this post of sharing how it’s like for her to navigate the social sphere as an adult with Autism.
I have worked with autistic primary school aged boys, but have no real idea how the world is viewed by them. Apart from knowing that it is different to how I see it myself. And being patient.