Here I interview artist and singer, RozaGy about a recent song to raise autism awarness.

DONNA
Hi Roza,
I met you at one of my UK lectures last year. You were quite memorable perhaps in part to a rather obvious eccentricity and the fact you came armed with wonderful original sparkly paintings to show me. Tell me about your ARTism and how it fits in with, or is independent of your AS?

ROZA:
I started making art following a head injury in 2006 after falling in a supermarket. I developed epilepsy and began painting obsessively. I can’t see well, even with strong glasses so I make art textured to feel my way around. I use acrylic paints then stitch on hundreds of beads. The process helps me to relax.

I did classical music since 5 and was a hyper-active child, jumping, spinning, screaming, climbing. I was bullied at school and to calm me I was taken to the costume-making department of the opera house while my dad rehearsed his operas. I’d touch all the different textured scraps of fabric, sequins and beads – it was a sensory heaven! Nobody taught me how to make art. I do what I do because I want to work with materials I love to touch. The process helps me with panic attacks. I do art to stay sane.

DONNA:
Ah, as an autie who tends towards Rapid Cycling Bipolar, art is one of the few things keeps me relatively cohesive and in terms of social phobia, I feel socially engaged with art. Its an important way to reach out to the world if you’re also naturally more reclusive and solitary.

You are also a singer-songwriter, how did your music start and how would you describe your style as a singer and as a writer?

ROZA:
I’ve been doing music for years but I’m more of a singing composer. The subject matter of my songs is usually to do with frustration and rebellion. The lyrics and melody come in response to something happening in my life helping me express how I feel. Usually pretty defiant. I need both art and music to survive because depression and panic attacks are a real problem for me. And I need to have level head for my two children.

DONNA:
I care for people and to me children are just people, small people. But I struggle to tell what time of day it is, sometimes which day it is. I’ve mastered running a bath two years ago (see my article on Expert Bath Runner) but I’m still working on the fire part of ‘fire and flood’ so cooking is still a challenge. Can’t see kids in all that, and as a solitary I’d have locked myself in the cupboard with headphones on, I’m sure. So hats off to you with two children. I couldn’t do it.
You have a single just being released. What was the inspiration behind it and who does it benefit?

ROZA:
The song Open Every Door was written by a Sri-Lankan superstar Nimal Mendis to raise awareness of Autism and highlight the need for better services for people on the Autistic spectrum. The CD was presented to a British Prime Minister in spring 2007 by the leader of Autism Awareness campaign Ivan Corea who’s done a lot to bring Autism into public eye. I was working on the idea of opening the first British Art & Music centre for Autism and asked Nimal to perform at the opening. He’s heard my music, liked my voice and asked if I wanted to record my version of Open Every Door as a symbolic call for action to support people on the Autistic spectrum. The situation for adults with ASD in the UK is dire with no support available at all. I wanted to help bring about change of perception of Autism. The profits from this song will go to Autism research centre in Cambridge headed by the wonderful Professor Simon Baron-Cohen because the work they do is groundbreaking, humane and in the interests of people with ASD. The rest will go to support Autism awareness campaign and maybe to organise a concert.

DONNA:
Yes, I really like your voice. Your accent adds an enigma to the track. I think the track is very about motherhood. I have two albums and my tracks are more from the autistic experience rather than from a mother’s one watching her autistic child. but I did write a song, ‘Days Become Weeks’ which was about a mother and her adult son with autism.

Old stereotypes about autism and AS have become replaced by new, just as tedious, ones. What are your views on the stereotypes and the culture versus cure debate?

ROZA:
I don’t personally think Autism is a disease. I certainly “don’t suffer” from it but rather I suffered as a result of prejudice by people who sensed my vulnerability. And when I get stressed out, I rock, talk to myself and avert my eyes which is often misperceived as being crazy or untrustworthy and results in further discrimination and hostility. I believe Autistic people should receive the help if they need it while being encouraged to develop what they are good at without being unnecessarily stressed by the people “in power”.

DONNA:
I think autism is a fruit salad and in that fruit salad some people have severe health issues – gut, immune, metabolic disorders, severe, even life threatening mood disorders, crippling levels of anxiety disorders resulting in severe self injury. And some of this is in the most autism-friendly environments and families. So we’ve got to get a grip that its a wide spectrum and that whilst an autism ‘fruit salad’ is not a ‘disease’ or ‘disorder’ for some people, its components certainly are for others. There’s no denying that Ulcerative Colitis, Coeliac, primary immune deficiency or inherited SEVERE degrees of Rapid Cycling Bipolar, OCD or Tourette’s or crippling Catatonia for example are in the disease/disorder camp and when those occur untreated in someone’s autism fruit salad, these are an integral part of the severity of what gets labeled their autism. We can’t just draw a smiley face on stuff like that and call it cultural. But, sure, this stuff isn’t in ALL autism fruit salads, but it is in a significant percentage – perhaps as high as 30% of people at the autistic end of the spectrum.
People with AS have sometimes claimed that if they didn’t have AS they wouldn’t be them. But parts of AS are personality traits, behavioural quirks, learning and processing differences and others can be more clearly health issues. I don’t believe any of us are just big walking bunches of conditions. We also have our own sets of personality traits, our upbringing, our race and ethnicity, our life experiences. What parts of Roza did AS not create?

ROZA:
I agree with you about AS being both psychological and neurological based. But I’m not an expert so I don’t know which is which in me. Autism to me means having an ability to concentrate on doing what I love doing and having the tenacity to achieve goals and never ever giving up! But it could just as well have been hereditary, i.e. observing my Father at work (he was obsessed with music). Also, I’ve been through hell in life because of my naiveté and compulsiveness. But this same naiveté had brought me to England at the age of 19, driven to succeed, with only basic knowledge of English and no social skills. That same naiveté that I believe is why I survived because sometimes the bad stuff just went by without affecting me. I don’t know what is AS and what skills I acquired just to survive. Probably, it’s a bit of both.

DONNA:
I do think there’s a hereditary component for many people but this doesn’t rule out that for others its both hereditary AND environmental and for others far more environmental.

Some people with AS wear their diagnosis as a badge of honour, others as a badge of shame. Whilst the labels can be important to funding, do you think on a cultural, social and psychological level we’d all be a lot healthier if we just saw ourselves as part of general social diversity without getting too precious about the labels?

ROZA:
I always wanted to belong, somewhere, anywhere but never could. Since my AS diagnosis, I find myself meeting others with AS and I feel I finally could belong. In this respect, “label” of Autism helps me with my identity. Also, I tend to want to help the “underdog” whenever I can because I identify with them. No two people with Autism are alike, anyway. But it probably helps to identify with a group of people that share something, especially for Autistic teenagers. It was the loneliest time for me and with high depression rates that would be important and reassuring for some others, I’m sure.

DONNA:
I understand the relief of finding others like oneself. I think we have to accept this of non-autistic people too… that they also crave having a friend or sibling they feel more ‘akin’ to. But there’s also great things in being open hearted about the anthropological adventure of bonding with someone autie-friendly who is not autie-spectrum. And I’ve met some autie spectrum people who are harsh, militant, reactive and separatist, or put down the uniqueness of diverse minds in the non-autistic population. This doesn’t do it for me. How can one preach acceptance of diversity, then essentially disrespect or minimise that in others?

You are a mother who has AS. With stereotypes linking AS to lacking empathy, even psychopathy, how do you feel AS helps or hinders you as a parent?

ROZA:
My mother tried to kiss and cuddle us all the time even though we hated being touched and often escaped. She’d tell us how wonderful and talented we were and what a great future we had even though to others we must’ve seemed like a pair of screaming, uncontrollable “brats” with all the mood swings and unexpected tantrums. I don’t know how she coped! My Grandma however believed in physical punishment “for your own good” and had a heavy hand. So having tasted both styles of parenting, I knew exactly how each one felt and chose my Mother’s. I have found parenting my children easy because I recognise a lot of myself in my son and understand. And I think when you feel the almost animal love for your offspring so deeply the parenting skills just come from within. It’s probably because I know for a fact that I was loved and respected as a child by my parents that I can experience this unconditional love for my own children. It has nothing to do with AS.

DONNA:
I can’t bear the clingy, fuss-fuss, pursuit thing. It’d up the tempo of my natural feral nature. Eek, there’s got to be boundaries or whose life is whose? Some forms of ‘love’ tread too close to co-dependency or emotional incest (ie ‘smother love’) for a solitary like me, but wow, I have a wide personal space, wider than most people. As for learning to love from being loved, I had a combination, I was detested, feared, rejected, harmed, but also valued, entertained, loved. Sometimes a parent can both love and hate a child too, they are wrestling with their own demons, and who knows who will win. That makes a kid ambivalent because you can’t work out which identity to take – the survivor or the child. I actually think I’m pretty rounded by the diversity of feelings and experiences in growing up. I also think some personalities simply befriend caring, kindness, empathy, intimacy and involvement better than others. I think I’ve done well to love people as much as I do, but I sure do ensure the boundaries are clear and personal space is sacred.

Society is so afraid of people on the spectrum, stereotypes leading people to see them as dangerous or a pitiful burden on families and society. Who are some of the most inspiring people on the spectrum and why?

ROZA:
Steven Spielberg of course comes to mind because he’s so immensely talented and he has an official diagnosis of AS. Also, I think Pharel Williams is great – I love his music. And you, Donna. Because you are all cool! You all defy the stereotype of what Autism is (which I’m finding is all wrong, anyway). But apart from you three there isn’t really anyone inspiring with AS who comes to mind. The problem lies with the fact that many people in the public eye who are talented and successful don’t openly declare their AS, possibly for fear of stigmatisation. But unless we have more role models on the Autistic spectrum being seen to lead normal productive lives, the society will not easily give up their idea of what they THINK Autism is and continue to prejudge based on the “label”. We need more positive role models!

DONNA:
I have met so many wonderful inspiring people on the spectrum and many of the most inspiring had small achievements which were mammoth given the challenges they had. So if someone meaning deaf comes to type or speak, or if someone meaning blind achieves supported independence or someone with severe mood, anxiety or compulsive disorders finds that supplements, diet or medication help them manage enough to learn any new skills or functions, those folks inspire me, move me, they are my heroes.

We used to have the Refrigerator Mother myth in which cold mothers were blamed for causing their child’s autism. It’s now widely known this doesn’t cause autism but do you think SOME mothers fail to bond with a child with autism and why?

ROZA:
I can’t answer for other Mothers as I don’t have enough data. I was born Autistic but wasn’t diagnosed until 35 so nobody had told me why I’ve had so many problems and that I “couldn’t go to University, get married and have children”. I just did it. However, since my diagnosis I was put on “at risk” register for “possible emotional abuse” and falsely accused by Social Services of teaching my children with Autism. The day my children were first placed on child protection, I was so scared and angry, I painted the first painting in my “DON’T Demonise Autism!” series. Because I felt Demonised over my diagnosis. My Genies – the female Demons – only look “different” to society but they are as normal as any other mothers who love their children. We were put through hell because of the ignorance and it took almost a year for me to be fully cleared. It wasn’t the Autism that caused my problems but people’s reaction to the word “Autism” in my file that made them distrust and even abuse me. Why is it ok to Demonise Autism? To really understand what Autism is and the difficulties it creates for Autistic people we need more research.

DONNA:
I don’t know about that. We have a gazillion first person accounts now explaining plenty about what autism is to those who can type and speak. I don’t think that throwing research bucks at that will do much more than all those advocates are already helping do. If money needs to go somewhere how about respite care, decent residential services, great day care programs, self employment programs, mentors… the list goes on. Then we could consider the even harder situation of those with autism in 3rd world countries who often don’t even have books, never get public speakers or can’t afford them and have no government services at all for their kids – not even crap ones. Maybe we could think about that too. I certainly feel its part of why I do so much public writing, because I have people in some of these places for whom this is one of their scarce FREE services (speaking of which http://www.auties.org is there for all of us).
Saying that, research can help us to get the numbers on how many people have which parts of an autism fruit salad (I wrote of that fruit salad in Autism; An Inside Out Approach and in The Jumbled Jigsaw) and that should help society work out better how to fund programs and which ones to fund.

All the best with the release of the single. I understand people can download it for 49
pence and that the proceeds go to a cause which supports adults on the spectrum.

ROZA:
Proceeds go to Autism research about how best help both adults and children on the spectrum and to help raise awareness of Autism through organising positive events like concerts and art exhibitions of people on the Autism spectrum.

DONNA:
I think autism arts is pretty important. Arts is about food for the soul. And for many people on the spectrum it has given them a voice.

I’ve heard the song and I think it’s wonderful and I hope to hear you perform it across the UK if not beyond. Where can people listen to it?

ROZA:
You’re very kind Donna. Thank you. The direct link to Open Every Door single is here: http://www.mediaeyeproductions.com/singers.html Hope to sing it with you one day Donna and I hope the song will do some good for Autism awareness. Thank you for interviewing me.

DONNA:

You’re welcome and I hope you go list it on http://www.auties.org

… Donna Williams *)

http://www.donnawilliams.net