Saturday, April 1, 2017

Interview with Penni Winter- Autism Acceptance Day 2017

This interview is with Penni Winter from New Zealand. Welcome, Penni!

My name is Penni Winter, I am a 61-year-old cis woman from New Zealand, thoroughly Kiwi (go the All Blacks!), of mixed ancestry but identifying most strongly with my predominantly Irish Catholic maternal heritage. And yet I’m not typical of any of that. I’m a lesbian, but also celibate for the last 20 years, largely by choice. I’ve been in the feminist movement, the anti-racism movement, the fringes of the New Age movement, been to university and dropped out several times, raised a child as a single mother, got sick with what was later diagnosed as Chronic Fatigue Syndrome, lived in the city and small towns and the country… And, perhaps most importantly of all, I am autistic. Though I was undiagnosed till late in life, still it set me apart from others, no matter how hard I tried to overcome or hide my ‘difference’ (I had no other word for it). This sense of never quite fitting in ultimately led to me calling my blog ‘A Stranger in Godzone’. ‘Godzone’ being what we call New Zealand (“God’s Own”), and me being the ‘Stranger’.

What is your life like as an Autistic person? 

My life as an autistic person has always been complicated. I floundered and flailed and stumbled from one mess to another, one bad situation to another. I could not get my life in order, could not get myself in order, could not make sense of the world or other people. I was criticised, rejected, put down, laughed at, sneered at, ignored, snubbed, and in one relationship even emotionally abused. That’s the past.
Today, it’s a lot calmer, through my having learnt what I need to do to keep it that way. I live alone, I don’t have permanent work, I spend much of my time solitary. I meditate, I write and paint, I work on my emotions and staying in charge of my life. I still have sensory and other challenges; my life still isn’t what you’d call easy. I still find people and the world hard to figure out, but at least now I know why.
And some things are much better now than they used to be. Simply being ‘out’ about being autistic has been incredibly freeing. I’m no longer ‘pretending to be normal’. (Which, incidentally, was the title of the first ever book I read by an actual autistic. I was blown away by it.)

What is the most joyful, fun, exciting thing [you can have more than one!] about being Autistic? 

I think my special interests, and the use of my creativity, would be the best things about being Autistic. I love indulging myself by, for instance, reading architecture books, or finding out some new fact about my family history, or reading a new fantasy novel by a favourite author.
I also love writing and painting – and I feel I do these in a very autistic way. I’ve been complimented numerous times, for instance, on the level of detail in both my writing and my paintings. I’m kind of perfectionist! I don’t like to let any small imperfections go. Though it’s something I have to restrain in myself, as I can ruin a work if I’m not careful.
I think too that I like my rationality, in a world that seems to me to be utterly crazy. I’m not saying I can’t be irrational at times, but ye Gods, what an ego-driven world we live in. Its values seem so skewed to me. I just sit there and shake my head sometimes.

What is the most difficult [you can have more than one!] about being Autistic, for you? 

There are lots of things I find difficult… it’s hard to say, as I wouldn’t want to give up being autistic, as that would mean I’d be someone different. Probably the things that are or have been most difficult to deal with, on a daily basis and historically, are the ‘co-occurring conditions’ - alexithymia, sensory processing disorder, auditory processing disorder, hyper-empathy, executive dysfunction disorder… these have kind of scrambled my life. 

As far as my autistic ‘core’ traits go, I find the lack of social smarts very difficult. I wish I could communicate and get along with people better. Though, perhaps, what’s worst is the sheer lack of understanding of what it actually means to be autistic, in the general populace. That is One Big Thing I wish I could change.

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?

Autism Acceptance Day, Autistic Pride Day, Autistic Speaking Day, the autistic pride and autistic rights movement in general… all these have been crucial, together with the autistic community itself, in transforming me from the shame-ridden, self-concealing creature I once was, into the ‘Say it Loud and Say it Proud’ person I am today! 

When I first began to suspect I was on the spectrum, if I had only read the professional literature about autism, I would never have come to this point. I would have either rejected it all, and carried on like I was, or died of shame that I was such a flawed creature as they described. Fortunately, I found the autistic community and, well, here I am today. I would never have thought, once, that I could be like this. It’s amazing. Hurray for autistic pride!

What does “moving beyond awareness” mean to you?

‘Awareness’ to me is pretty negative. It makes me think of PSAs like ‘be aware of these signs of cancer’. The general tone of autism awareness stuff is ‘let’s tolerate the poor autistic, they can’t help it’, or even ‘look at this awful scourge of autism, let’s eliminate it’. 

Moving beyond awareness however is about transitioning to acceptance. Acceptance to me means people not just ‘knowing’ that autism exists, but actively embracing it as a valid alternative way of being human. Accepting that autistics ARE human, which tends to get forgotten in ‘awareness’ campaigns.

What is one thing about acceptance that would make a difference in the world?

I think just being allowed a voice at long last. We would be HEARD. We would be seen as equals, not pitied or tokenised or ignored or overlooked because we use different methods of communication, or all of the other things that have happened to us up till now. With that voice, we could finally start to change things for autistics of all ages and ‘functioning levels’ (much as I hate that term).

Interview with Jean Williams-Autism Acceptance Day 2017

This first interview for Autism Acceptance Day 7 is with Jean Williams, who is 62. Jean was the first person to return the interview questionnaire this year! Happy Autism Acceptance Day, everyone! Jean writes:

I am a married female software engineer, who was diagnosed as Autistic at age 19, but then never received any assistance or treatment. 

What is your life like as an Autistic person? 

It was a very hard road, and I struggled a lot. I always felt out of place in every situation, and the work environment has always been stressful. I was okay when I had a well-defined task that I knew how to do, but any new assignments, or meetings always trigger a lot of anxiety. I have always had a hard time in social situations. I do not understand the "rules" of relationships, though I love people tremendously. I have always so wanted to have real and meaningful friendships, but never knew how to facilitate that happening. My only escapes have really been nature and music, the only two things that have always given me a feeling of security and being grounded. 

What is the most joyful, fun, exciting thing about being Autistic? 
To me the best thing (and sometimes worst) about being autistic is that I notice everything - and I take nothing for granted. As much as my emotions can go lower than low, they can also go higher than high. When I love something (or someone), I love it (or them) with my whole being. Love - of all sorts - is the most joyful thing - yet among people the difficulties I have in understanding how to build the relationships which will allow me to share that joy is also the hardest. 

What is the most difficult thing about being Autistic?
To me the most difficult thing is the social aspect. I believe I can read people's "soul" pretty well - I know to the core who they are quite readily. It is just what to do about that, that becomes hard for me. Whereas I know so quickly that I am drawn to someone, the oddnesses and complexities of me seem to make other people keep me at arm's length, and that is so hard for me. I just want to tell them, "don't you see, I have a good heart, and you can trust me, and I love you, and please just believe that, and let me..."

How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?
It has not (yet) really affected me personally. I think the effort is much less visible here in the US, and as such people as a whole still have a big stigma attached to autism.

What does “moving beyond awareness” mean to you?

I have this idea in my head that there is wonderful in everyone, and that accordingly there are also faults or differences in everyone. I personally look at others and chose to concentrate on the wonderful. All I wish is that others could look at everyone who is different and choose to see what is good in them, and what gives them commonality. People are social beings - and it is so hard to feel left out of life just because I might approach things differently than others.

What is one thing about acceptance that would make a difference in the world?
To me acceptance goes beyond Autism, it goes to anyone who is different. People often seem not look at others to understand them, or support them, or accept them - or most specifically to love them. I think the world needs to adopt a posture of love, and put aside differences - and table all the looking out for #1 talk - and realize that we are ALL in this together, and that ultimately the world succeeds together or will fail together. Too many people's lives are lost or wasted because society did not look to realize their potential, and work to help each individual succeed and (as someone I know and love stresses) to shine. That recognition of the need to work toward lighting a light of capability, of love, and of caring among each individual is what will ultimately go beyond just awareness, beyond "acceptance" to allow EACH individual in the world to contribute to the betterment of everyone. So really - it is not good only for the autistic individual to support and facilitate them - but for the good of society as a whole. 

Thank you Jean. It is a real pleasure to get the chance to interview you and post your thoughts.