Wednesday, April 16, 2014

Autism Acceptance Month 2014: Dani Alexis

This month we're asking our autistic community members What Do You Want? What Do You Need? We'll be featuring their answers all April long, right here. Today we're having a conversation with autistic advocate Dani Alexis. Please read, listen, and share.

What are some things you like people to know about you?

I'm currently a graduate student in English at Western Michigan University, researching what I'm calling broadly "autism literature, narrative, and discourse." So far, that has meant everything from analyzing the poetic elements of literature by autistic writers to looking at the terrible mismatch between what we say publicly about ourselves and what is said publicly about us. When I'm not at school, I'm usually enjoying time with my husband and our two very spoiled cats and blogging at danialexis.net.

What are some things that make you happy? Why?

Figure skating, which feels like complete mental and physical freedom for me. I'm much more graceful on skates than on "land." While I'm skating, I can't think about anything else, so it's also a great mental and emotional "break" in the middle of all my academic work. I also love spending time in the library: the quiet between the stacks and the smell of books is the safest place I know.

What are some things you avoid whenever possible? Why?

Talking on the telephone, especially with strangers. If I don't recognize the number or I'm not expecting a call, I don't answer. I do the same thing with the doorbell: if I'm not expecting a visitor or a package, I'm not here. I also prefer not to drive -- luckily, my husband enjoys driving, so I can frequently avoid it.

What features does your ideal living space have, and why?

My ideal living space is a university library without the public. I find the smell of the books and their visual and tactile weight very comforting. Most libraries have a great deal of natural light, which I prefer. And there is absolutely no clutter -- everything is (ideally) either organized where it belongs or accounted for in the system. Above all, it's quiet -- not only am I not expected to talk, I am expected to not-talk.

What are your favorite books, movies, and/or TV shows?

Books: Barbara Kingsolver's The Bean Trees, Minrose Gwin's Wishing for Snow and The Queen of Palmyra, Bonnie Jo Campbell's Once Upon a River, Anne Carson's Autobiography of Red ... I could list favorite books forever. I also collect old Girl Scout handbooks; my prized possession is a 1916 edition of the first published handbook, How Girls Can Serve Their Country.

Movies: Compared to most people I know, I have seen almost no films. I love Gone With the Wind for its extraordinary visuals (and in spite of its problematic storyline) and Wit for Emma Thompson's remarkable performance.

TV Shows: I'm currently hooked on Agents of S.H.I.E.L.D.  I will never say no to a marathon of Star Trek or The Simpsons.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I'd like to see more characters who are canonically autistic, but who aren't turned into a plot device or an afterschool special.  I'd especially love to see more (realistic) portrayals of autistic women and autistic people with multiple disabilities.

What are some things you'd like the media and other people to stop saying about autistic people?

I would be thrilled never to hear the words "high-functioning" and "low-functioning" ever again, especially when they are based on someone's ability to produce "normal" speech (spoken, in complete sentences, fits the prevailing neurotypical view of what people are "supposed" to say in the situation, etc). This is language being used as a weapon against autistic people in multiple ways. First, it cuts us all out of the conversation on autism by asserting that autistic people who don't speak "normally" are too "low-functioning" to know what they need and that autistic people who do speak "normally" are too "high-functioning" to be having a real autistic experience in the first place -- both of which are simply wrong. Second, it presumes there is a "normal" or "ideal" form of communication, and that alternate forms are either marks of a pathology or not communication at all.

In my research, I've been particularly captivated by Gayatri Chakravorty Spivak's question about marginalized groups, "Can the subaltern speak?" This seems to me to be a particularly compelling question for autistic people because so much of the discussion around our personhood is predicated on assumptions, not only about our ability to participate (which is what Spivak means by "speak"), but about our ability to actually speak.

If you could change one thing to make the world more friendly to autistic people, what would it be?

I'd normalize a much broader range of communicative forms (speech, writing, typing, sign, pictures, etc.) and content (logical, poetic, etc.) -- but I'd encourage listening above all.

Tuesday, April 15, 2014

Autism Acceptance Month 2014: Olley Edwards

This month we're asking our autistic community members What Do You Want? What Do You Need? We'll be featuring their answers all April long, right here. Today we're having a conversation with autistic advocate and parent Olley Edwards. Please read, listen, and share.

What are some things you like people to know about you?

I am a undiagnosed Autistic UK woman, not undiagnosed due to lack of symptoms or cringe-worthy and naive experiences but undiagnosed due to lack of awareness of gender differences in autism traits by the doctor I saw at that time. I work to raise awareness of gender based traits of AS and support diagnosed and undiagnosed AS (autism spectrum) females and their families. I do this by making short films, writing books, attending talks, and public speaking.

I am a single mum of three daughters: ages fifteen, eleven, and six. My eldest is neurotypical, eleven year old who's Asperger's, and my six year old has "standard" autism.

This may all sound rather tiring. Truth be told we couldn't be happier, having little sleep due to children's sleeping issues is the flip side to the belly laughs and quirky (sometimes awkward) moments the day brings, nope it's not easy but the best things in life aren't easy. I find happiness in the bond my daughters and I have, we smile at the way we can "click" and understand the children's needs, even if they are being selectively mute I will just "know" what they need and this isn't one way -- a prime example being when I was driving one day, a song came on the radio it reminded me of a old friend before the days of lack of sleep. For four minutes or so I went on a trip down memory lane, then my youngest shouted out the name of the person I was thinking of. They don't know this person? Not a common name? If telepathy exists I reckon AS people are the key to exploring this -- the bond we have is so unique.

What are some things that make you happy? Why?

I believe that our life should be led to the full regardless of diagnosis; we go all the places anyone goes, in fact our lives in many ways are probably fuller than the average due to our sense of exploration, and fascinations.

Like many AS people materialism is not a high priority; we enjoy arts, be it acting, singing, painting, drawing, writing, film making -- if we can spend an entire weekend in comfy clothes to do so even better. :)

What are some things you avoid whenever possible? Why?

We avoid the obvious places that trigger sensory issues. Busy supermarkets, town centres and such.

What features does your ideal living space have, and why?

Our home is clean but its also happy and well lived in! Homes should be there to please the occupants not the visitors, saying that we rarely have visitors, a good friend or neighbour sure -- but it's by no means a home of heavy human traffic. It can't be; this is our retreat. Our personal space where the girls (and my) social skills are left at the front door and we are just ourselves. We hardly have the big lights on, we have visual stress and lights lead to migraines. We also are very laid back on rules: you want to eat with your hands? You need to rock? You need to hear that song 67 times on repeat? Or play Lego for 48hours? Be our guest. ;) An AS home is a culture in itself, not worse, not better -- just different.

What are your favorite books, movies, and/or TV shows?

We enjoy reading, and watching films as a family too -- current favorites being The Hunger Games, anything Spiderman and Doctor Who. My personal faves when childfree viewing permits are non-fiction documentarys, or comedy films such as Juno, or the TV show Big Bang Theory -- Sheldon is a good Asperger's role model! I also have read and watched The Time Traveller's Wife more times than I care to admit, time travel's a big hit with us.

What autistic experiences would you like to see more of, when it comes to storytelling efforts like books, movies, and/or TV shows?

I have watched several Autism TV shows and films, normally based upon either males or based or undermining or over glamourising Autism. Since Feb this year I've been writing a feature length film with a lead Asperger's woman, In last few months I've teamed up with an experienced writer and we are well into script.

What are some things you'd like the media and other people to stop saying about autistic people?

If I could change one thing for AS community and society as a whole it would be to lose the stigma and negativity towards AS.

If you could change one thing to make the world more friendly to autistic people, what would it be?

We've had race rights, sexuality rights -- I truly believe neurodiversity is the next human rights issue. It's time to stop pointing fingers of blame. AS is genetic, not due to vaccinations, I know this is unpopular to some but hear me out.

My two daughters were diagnosed in the same year I was divorced. I was desperate to blame someone or something. I blamed the MMR (Measles, Mumps, Rubella vaccine). I was hell bent it damaged my perfect baby. I even tried to sue the NHS. I refused the MMR for my younger baby for two years, she was diagnosed BEFORE any vaccination.

And guess what: my parents didn't vaccinate me incase I "caught' Autism. Well that failed ;)

The most anti-autism parents are often the most undiagnosed.

Look into various presentations of AS. Open your mind open your heart and be proud of your very special path.

Autism is a difference, not a disease to be cured, mocked, or scaremongered by companies making a mint giving false "hope" to exhausted parents.