Lisa Niehoff works for Mainstream Living, Inc which provides services to the disabled in Iowa.  She is editor of the company’s monthly newsletter, ‘The Insider’ which profiles disabled artists.  She asked if I could write a profile piece for her magazine so instead I invited her to pose me some interview questions, and rather personal they were.  Here’s our interview:

LISA NIEHOFF

How about if you begin with a basic testimony of your life and disability.

DONNA WILLIAMS

Hi Lisa, and hello to your readers at Mainstream Living.

I feel I’ve progressed from autism to ARTism as spend probably 80% of my life in arts. I’m a writer (author of 9 books with Jessica Kingsley Publishers including two international best sellers; Nobody Nowhere and Somebody Somewhere), an artist, sculptor, screenwriter, singer-songwriter. I’m lead singer and singer-songwriter with the band, Donna and The Aspinauts.

I also became a qualified teacher, am an international public speaker, and have been an autism consultant since 1995.

Diagnostically, I first became aware of being introduced as feral when I was about 3 or 4 and I remember being introduced as psychotic and disturbed from about age 9 (I was assessed in a hospital as psychotic at age 2 in 1965, then labelled disturbed in the 70s). I remember the word ‘autistic’ since I was about 10 which I later learned was because the idea was raised with my family around that time (1973) but I was not formally diagnosed with autism until 1991. I didn’t understand sentences until late childhood.

In addition to being formally diagnosed with language processing disorder and autism, other diagnoses over the years including two primary immune deficiencies (no secretory IgA and a white cell deficiency), gluten, salicylate and phenol intolerance, severe casein allergy, type 2 diabetes, a B12 deficiency and a genetic myalgic condition which results in higher levels of inflammation than most people. I was also diagnosed with atypical epilepsy in my 20s, with a visual perceptual processing disorder at the age of 30, and medicated for lifelong mood, anxiety and compulsive disorders in my late 30s.

LISA NIEHOFF

How did it feel to be labelled and kept on the outer fringes of society, especially at such an early age of 2 years old?

DONNA WILLIAMS

I don’t know about kept on the outer fringes. I know when I was 6 months old to 2 and a half I was in a welfare centre during the day and cared for by nuns. From about 2-3 I remember being in my room a lot and I know it was a very hard time for my mother, who was also dealing with alcoholism, and I remember being restrained and shut in my room.

But from what can remember from age 3-5 she tried and ultimately succeeded in getting me into a kindergarten class at Gilmer College, which I understand from someone who worked there in that era that it had a reputation for including special needs children. I was there from age 3 and a half to age 4.

And she managed to get me integrated into a dance class from age 5 and at primary school I was essentially put through the gate and left there. I was lucky in that I got selected for a special training class called The Country Infant Room where city teachers learned to teach country children, so it had only 6 children my age and I’d stay with the same teacher for 3 years. When that teacher called my mother in the first week to complain that I wouldn’t stay seated, sang to myself all day and wouldn’t answer a question, my mother apparently threatened to punch her if she was called in for anything that stupid again. So after that the Psych and Guidance at the school had to help the teachers deal with me over the next 7 years.

My mother would also take me out of school on her shopping days so I had a huge amount of patterning in daily life and given I was meaning deaf, face blind, relatively object blind and context blind, this was so innovative and important. But I think what this showed is that however challenged my mother was by a child which ‘couldn’t act normal’ she was very good at driving inclusion even though she completely refused to liase with professionals in the process.

And the community was wonderful. The local shops accepted me even though I’d eat food from the supermarket shelf and at the milk bar go take things from behind the counter then try and put the money into the cash register for myself. People treated me as ‘a character’ and it probably helped that there was no parent for them to turn to.

It was from my teens that I experienced marginalisation. By then the family had completely broken down and I was experiencing exploitation and homelessness. That was tough.

LISA NIEHOFF

Society has changed in it’s understanding and treatment of autism, but have the challenges gotten any easier to face and accept as you’ve grown older? Do you still wake up with an angry black cloud over your head and question, “Why did this have to happen to me?”

DONNA WILLIAMS:

Angry black clouds?  No, not at all. I’m a pretty optimistic, resilient, adaptable personality. From 6 months old and up to age 12 I’d stayed with a variety of extended family, adopted myself another family when I was 8 and had a ‘foster family’ from 13-15 so I had so vast an array of adapting to do, there was no place for feeling sorry for oneself.

I did find immune deficiency incredibly hard as I had chronic ear, throat and chest infections from the age of 6 months and by late childhood I’d have double ear infections and couldn’t roll over and it was pretty painful a lot of the time. My chest would be so mucky I’d feel I was drowning and after 3 months of an infection I’d struggle to cough and have to breath steam or lay over the side of the bed to drain muck. My throat would swell up and it’d be like having a really painful golf ball in my throat and my tics (which I’d had since age 2) would flare terribly when I had a bug, so it was very very tough from a health perspective.

The Exposure Anxiety was extremely frustrating, particularly once I began to understand language and string functional sentences together (previously was highly echolalic). The more aware I became at that time (around age 9-11) the more entrapped I felt by Exposure Anxiety which made me riddled with involuntary avoidance, diversion and retaliation responses.

I developed OCD issues around age 9 and had weeks and months of Selective Mutism episodes and both were very tiring and entrapping, particularly in a household which by then was ravaged by substance abuse and violence. So I did feel poor me about that because I could see from TV shows that other families weren’t all like this. I couldn’t understand why my family couldn’t fix itself.

I had Rapid Cycling Bipolar issues from age 3 so I was used to utter euphoria, utter rage, utter mania, utter terror, utter grief, but these were like storms (I was later diagnosed with Atypical Epilepsy) so they would each last about 30-60 minutes so by late childhood, I still struggled to live with this level of chaos but it was hard to have a poor me attitude about it because it was so dynamic, I didn’t get much time to feel sorry for myself.

I really suffered a lot from the meaning deafness but only once I could finally understand 50% of speech (by age 9-11). Up until then, I thought people were all just making sound patterns at them (I thought THEY were all echolalic 😉 . Once I understood I couldn’t understand in a world which could I’d thump myself in the ears and glare angrily and throw myself back into the chair over and over until I was stopped, because I was so angry at being this way, or that others weren’t. What really helped was when I was again verified as not deaf and my family finally grasped meaning deafness, slowed all speech, spoke in bullet points, used gesture and representational objects. So clearly the poor me thing also depends on the ignorance or understanding of the environment.

As an adult, I got treatment for gut, immune, metabolic disorders, for co-morbid mood, anxiety, compulsive disorders and for a visual perceptual disorder and I use fluent gestural signing when I need to translate people’s blah into concepts or track my own speech. So largely I have nothing to feel sorry for myself about.

Have the challenges got easier?  I do still get crap from people in shops if I can’t visually process where the end of a queue is and line up at the front or in the middle (I’m still largely context blind). I have people grump at me if I walk up to them and start speaking because they presume I can process the meaning of their mouths moving and sound coming out as ‘they are already speaking to someone’. I still get people who freak out because I’m extremely logical, methodical and utterly blunt and, ironically, I have people who think that because I care about people or are kind and helpful that I couldn’t possibly be autistic.  I still regularly meet adults on the spectrum who are chronically unemployed, underemployed or underpaid.  I still regularly work with families who have isolated their child because of the sneers and whinging of people in the street and shops. I still find people caught up in both old and new stereotypes and unqualified armchair experts who treat humans like bugs to publicly dissect.  But I also find people who feel proud of being open minded, truly diversity friendly and inclusive.

LISA NIEHOFF

What about your immediate family? Were they supportive and respectful? If so, do they continue to be involved in your life and the causes you support?

DONNA WILLIAMS

Goodness. Well its a tough one. My father was wonderful. He gave me as much of my own diagnostic history as he could and as he could dare. By then he no longer lived in the two way extremely abusive relationship my parents had, but it was politically still extremely hard for him to support me but he always did. He gave copies of my books to his friends and to the nursing staff looking after him (he died from cancer of the bowel, liver, pancreas at age 59). He believed in me 100%.

But he always maintained ‘my mother caused it’ even though he also told me ‘you’re not the only one in the family whose autistic, you have a cousin who was also like you’ (referring to a niece on his side of the family). And then my mother had always maintained at him that ‘she got it from you’ and ‘she takes after your mother’.

So there was so much fighting over the cause of my issues, how much was nature, how much was nurture. When my older brother visited me in my 30s, he said he had always hated me and that this was because ‘all the fights were over you’. I know there was a huge divide between my parents. In 1965 when I was assessed as psychotic at age 2, the order of the day was to institutionalise such ‘broken goods’.

When my mother was sectioned a short time after that, I was signed over to my grandparents custody (I have an adoption certificate – it was an inter-family adoption – which lead to this disclosure) so even though my mother was quickly released, it was impossibly to institutionalise me until both grandparents had died, which was not until 1970 by which time I was 7 years old. And in 1973 when the word ‘autism’ was first raised with my family (by a teacher who had taken me home overnight after finding me in the street after a violent fight) this word was a terrible slight on a mother at that time because it was still believe that refrigerator mothers caused autism.

So naturally, there was huge opposition to this idea and when I raised my diagnosis with my mother she informed me she had read more books on autism than I ever will and that there was no way I was autistic because I sang and could smile. And pretty much she’s stayed with the idea that I was instead disturbed or psychotic and I have to accept that she has her reasons for needing that view. I don’t feel resentful about that. Life is what it is.

I have some contact with my younger brother who was years younger than me and was about 7 years old when I had largely left the family. We’re both artists so we share that in common and he’s quite humanitarian in his values and philosophical in his thinking and I’m very much his proud older sister.

LISA NIEHOFF

What impact do you feel you have made for others who are suffering?

DONNA WILLIAMS

No real idea. I think I inspire some people and others have really got the boots in. I think the fact I’m still relatively healthy and intact regardless of all the challenges is hopefully a good model for people suffering from health issues, disability, marginalisation, isolation.

LISA NIEHOFF

Finally, tell use a bit about your personal interests and hobbies.

DONNA WILLIAMS

I’m married to a wonderful Welshman, Chris Samuel, who is rather on the autism spectrum in his own Aspie way, and who is a techie working in Super Computing and a wonderful photographer. We live in the hills in Melbourne, love nature, go walking, try and grow our own food, keep bees.

We have a lot of involvement with adults on the autism spectrum, started www.auties.org which allows people on the autism spectrum to directly market their skills to the public and we help run a monthly dinner club for adults on the autism spectrum. We also employ adults on the spectrum where we can and for about three years we have had paid gardeners who are on the spectrum.

Otherwise my life is a quite solitary, largely artistic one. When not alone (which I love), I spend vast amounts of time presently involved with the band, Donna and The Aspinauts and they’re a great bunch. We perform a combination of avant garde spoken word and edgy socio-enviro and diversity-friendly songs which express something of my spiritual atheism, my Taoism, my cynicism and my optimism.

Thanks for the interview.

Warmly,

Donna Williams *)

http://www.donnawilliams.net