Donna Williams’ Blog

Jane Strauss is a photograph, a woman diagnosed with Asperger’s, a mother of 5 children with autism spectrum issues and someone who has turned her autism into artism. She is one of the many fascinating people listed on http://www.auties.org . Here’s our interview.
DONNA:
Jane, you have 5 kids, all of them with autism spectrum stuff. That would surprise some people, shock some, even terrify some. Let’s flesh that out a bit. Where do you think their ASD stuff comes from? How differently autie are they? What are some of their greatest strengths?

JANE:
I have no doubt that their ASD stuff is genetic –IMO those who are insisting on heavy metal toxicity, vaccinations etc are barking up the wrong tree, so to speak protesting too much. Many of them, to me, look like HFAs/Aspies with a fixation on proving there is something (other than their own genes) to blame for their kid’s diagnosis. Most likely that is because they accept society’s definition of the Spectrum as evil and negative.  As far as I am aware, my brother is an Aspie, his son is somewhere on the spectrum, I have an Uncle who probably is autistic but in the 50s was just labeled retarded, my dad sure seems Aspie, as does my mom, and if my sister’s kids are not Aspies, I will eat my hat.

My children are mostly at the “functional” end, ie they all speak, in the past some have had varying degrees of echolalia and delays, the ones who are young adults have their issues but are functioning “in the world.”
My second daughter actually had “mental retardation” early intervention services, when she was three-five years old. She is now 23, married, an honors college grad, and manager of a clothing store. These days I expect she would have been diagnosed HFA, but then, and here, girls who were not classic Kanner types were being labeled with “autistic like behaviors” and it was left at that. She was poster child for sensory integration issues, before most professionals believed in them, and used to twirl and flap. Once she became a teen OCD like stuff took over, I think her showers tripled my ex’s water bill when she lived there in HS. Hey other than that, not an autie bone in her body…..
My eldest was a fan watcher, has had issues with word finding, sensory integration stuff, articulation and motor planning issues, NVLDs, oh yeah was also pretty much Oppositional and a pain in the Rear…and at almost 25 is a grad student in Special Education, Wants to teach adolescents labeled LD EBD and is an artist and filmmaker and absolutely delightful.

Number 3 looks like the classic nerd, did not read till 8 or 9, when he discovered SF ad fantasy books, could quote you movie scripts well before that, and is now a University Japanese major, his strong interests are Anime and Martial Arts, he is a first Dan black belt in ken jitsu and studying in Tokyo this year.

Number 4, finally spoke at around 3, signing first, liked flapping, spinning and fans, has battled eating issues, OCD, and cutting problems, now as a college freshman is self supporting and is living on her own with a boyfriend, and getting a 4 point 0 GPA. She is the one who once saw a movie about a girl with autism who had hippotherapy and told me she didn’t understand why everyone else in the movie was so confused about the girl’s motivations, seemed normal to her (I told here there was a reason for that…..) .  She is a talented artist and now thinking about being pre-med and going to be a shrink. Meanwhile she is perfectly happy knowing all about coffee ad working as a barrista and roaster and writing fiction and spoken word stuff.

Their greatest strengths are their creativity, out of the box thinking, persistence, and uniqueness.

Rafi is 10 and different, he has a large number of physical issues. Part of this is that he does not have normal immune responses.  He does not maintain immunity either from immunizations or from having an illness, and has IgG mediated  food allergies, resulting in leaky gut.  He has a pretty high level of NK cells and B cells nearly all the time.   We’ll probably be taking him to have his mitochondrial function evaluated pretty soon, as he also has pretty low stamina.  Some of this could be that his dad is interesting in that way, with many unusual allergies etc, some that I was past 40 at his birth. I think the jury is still out on how he will be as an adult, ad nothing ticks me of as much as professionals who let Rafi convince them he can’t do things….and let him get by with pretending to not be able to think.

DONNA:

I was sick every six weeks or so from the age of 6 months into my 20s so I spent 26 years regularly on antibiotics until everything collapsed and I was essentially a walking thrush monster, raved by CFS, now immune to antibiotics and overwhelmed by infections my two primary immune deficiencies left me helpless to fight.  I was assessed with severe reactive hypoglycemia and mild diabetes, systemic Candida and associated leaky gut, multiple food and chemical allergies including to salicylates, phenols and fluoride, later also with gluten intolerance, a functional B12 deficiency, no secretory IgA (the thing that tells your body what you ate or what bugs you’ve caught), a white cell deficiency, 5 times the high level of inflammatory cytokines (a chronic myalgic state) high levels of Quinolinic Acid (a neurotoxin triggered by undigested foods crossing the blood brain barrier) and low ATP.   One could say, ha, is that all!  But clearly getting healthy has been a major part of getting my brain on track as getting the reigns on associated mood, anxiety and compulsive disorders.  But given my background, I actually think I came out of it fairly well.  Most children born to alcoholics have major health issues and whatever immunity they got from their mother wears off at 6 mths of age.  If the child’s immune system isn’t intact, it’s all down hill from there.  These were once ‘failure to thrive’ kids, often, today the same kids are diagnosed with Pervasive Developmental Disorders and if they happen to also have strong ‘autistic’ personality traits, then they are more likely to express their chaos autistically.

There’s several Aspies and auties diagnosed on my father’s side (both his mother’s and father’s sides). On my mother’s side there seems to be quite an allergy to ‘autism’ or the entire ‘disability concept’ and it’s can sometimes be hard for society to tell sociopathy from ADHD or pschopathy or Schizoid Personality disorder or Schizoaffective Disorder from Asperger’s but there’s no reason one couldn’t have a combo. I certainly believe there’s ’stuff’ on both sides.

There are cure organisations which would like to eradicate ASD from the planet. Yet if we distinguish Global Developmental Delay from autism, if we distinguish co-morbid mood, anxiety and compulsive disorders from autism, if we distinguish ADHD from autism, or gut, immune or metabolic disorders from autism, or aphasias or agnosias or dyspraxia or dystonia from autism, then essentially all we have left is a collection of personality traits which behave ‘autistically’ when under the stress of OTHER conditions. What do you make of the desperation to cure or eradicate autism in this context?

JANE:
You left out Borderline Personality Disorder and one of my personal faves, MPD.  They think they do not understand it and so they want to kill it. Kind of like the Nazis and Jews. I don’t have a problem with that…as long as they agree not to use computers or anything that Autists might have had a hand in inventing…or eating meat from animals whose slaughter was helped out by Temple Grandin’s inventions….or like that.….

DONNA:
I do have a problem with bigotry and supremism, regardless of whether it’s people on the spectrum thinking they are the only geniuses on the planet or whether non-autistic people feel every signs of autism is a sign of pathology. When it comes to autistic ‘personalities’ society has much work to do in becoming diversity friendly.

You’ve been married and had your first 4 autie spectrum children to this marriage and since your divorce, you have another child with autism spectrum stuff to your new partner. A lot of Aspie men want to know how to meet Aspie women with a view to marriage or relationships or children. What would you say to them based on your own experiences as an Aspie woman?

JANE:
Give your partner space and be direct with them and tell them when you need space.

Realise that your children will have a good chance of being on the spectrum and learn all you can about the current fads so you can dispel myths and advocate.

Meet the woman of your dreams doing something you like to do. Sci Fi fandom, Society for Creative Anacronysm, reenacting, arts and computer related activities are all good. And remember, if You want to meet them You will probably have to start the conversation. And “wanna F***?” is NOT a good start. Read every bad joke on pickup lines and do not use any of those.

DONNA:
Fab, straight forward, simple tips.

Your new partner is an artist, as are you and both of you relate to the autism spectrum. So what do you think of the blurring between ARTism and AUTism? Is it often hard to tell the two apart?

JANE:
Yep, why would anyone care?

DONNA:
good question, but if society is misinterpreting ARTism as AUTism, and if that leads to people clamping down, even seeking to eradicate a child’s ARTism in the pursuit of getting them to ‘act normal’, then, as an artist for whom art gives meaning to my life, it really does worry me.

Do you think that social anxiety, eccentricity, being emotionally feral and verbal communication not being one’s forte might be part of the package of not just autism but of ARTism?

JANE:
They could. Or they could just appear because the artist is using their visual rather than verbal skills.

DONNA:
For me art is far more tactile, kinesthetic or musical. I see musically and kinesthetically through my hands. Movement is really important to me. So I feel I sculpt my paintings rather than rely on my visual skills.

I’m a prolific artist, so is my younger brother. We’re both also musicians and compose and he’s a dancer and beat box artist where I’m a singer songwriter. But as children we were both pretty developmentally feral and didn’t DEMONSTRATE in any way that we would become artists. Yet, looking back we can likely both see we’ve always been fixated by color, lines, form, acoustics, music and movement. Did you demonstrate your nature as an artist from a young age or were you feral like me, only able to tame your impulses enough to show your potential as an artist much later?

JANE:
I was pretty artistic from a young age. But then, if diagnosed today probably would have had a label of HFA, hyperlexia, and Sensory integration issues. My temper was not my strong point, I tantrumed a lot, but was not exactly feral, more like socially very young for my stated age. While I was using most of my energy trying to gain marketable skills, raise kids, etc, I got away from art, except in the sense of decorative arts, gardening, clothing design and the like.

DONNA:
Yes, I think that as people come to understand their own Autism issues as ‘fruit salad‘ made up of many different parts, it empowers us to better manage each of the parts and also to become better self-advocates. I can see my father fitted dyslexia, ADHD, bipolar and language processing disorder. There are other diagnosed people with autism and Asperger’s on his side and artism is rampant on that side. On my mother’s side were different issues, things like agoraphobia, addictions, depression if not bipolar, some OCD but it wouldn’t surprise me at all if at least two of the women had Asperger’s.

Tell me about your own art, what inspires you, drives you, how do you choose materials and subjects?

JANE:
My art is putting on paper what catches my eye, by means of the digital camera, and then using the lightroom to be certain it accurately depicts what I saw.. I have several kind of images I am interested in. Broadly speaking, they are shapes, buildings, machines, plants, and animals I sometimes take photos of people, but not often, and they are usually my family members. Our family has a significant case of the Old Car Hobby, and I photograph mostly classics from the first part of the 20th Century, especially their mascots which are artistic in themselves. I am fascinated by reflections and they often appear in my work. I take photos of repeated shapes, in patterns. Natural images of plants, mostly close up, are also part of my work.. And, I shoot photos of local buildings and their architectural details, wherever I happen to be.

DONNA:
I’ve seen some of your wonderful photography and I’d urge anyone interest in autism arts to go have a look at it. Where can they do that?

JANE:
Most of my actual shows are in Minnesota, where I happen to live at present.  In April, I have works as part of the 45th International Sister Kenny Artists with Disabilities Exhibit, and some as part of the Mpls vs St Paul show sponsored by Altered Esthetic, a local gallery of and by Artists.

On the web, my material can be seen at:

www.janesprints.com,

http://janesprints.imagekind.com/,

www.cafepress.com/janesprints ,

and

www.disabledartistsnetwork.net.

Several of these have integrated shopping carts and I also accept Paypal.

DONNA:
Thanks for the interview.

Donna Williams *)
author, artist, screenwriter, composer.

Ever the arty Autie.
http://www.donnawilliams.net
http://www.auties.org