Interview on the autism basics
I invited an Italian correspondent to post me 6 questions about autism. Here’s our interview:
DAVID MINOSA: What are your top three tips for those dealing with autism?
DONNA WILLIAMS: See the person, not just the condition. There is no ONE thing called autism therefore no one-size-fits-all approach or treatment. Just because someone doesn’t process information in ‘real time’, doesn’t mean they don’t have delayed processing.
DAVID MINOSA:What do you find are the most frequent mistakes people make in their dealings with those with autism.
DONNA WILLIAMS: Assumptions of mental retardation. For example there is no necessary relationship between speech aphasia, Selective Mutism, oral dyspraxia or verbal agnosia and mental retardation but people will constantly assume that no verbal speech means ‘nobody is home’, especially if there are also compulsive disorders or Exposure Anxiety. Another frequent mistake is the presumption all people with autism are hidden geniuses. Most of us aren’t that either, even if many of us will find at least some strength, be that sensory, intellectual, emotional, physical or spiritual.
DAVID MINOSA:Can you explain what you mean by removing straws from the camel’s back and how this relates to your own journey with autism?
DONNA WILLIAMS: Autism is a ‘fruit salad’. If that ‘fruit salad’ is too overwhelming the person may disappear under the weight of disability. By reducing the things which exacerbate the range of disabilities getting called ‘the autism’ then the personhood can usually have a chance to shine. For example, I have gut, immune, metabolic disorders, if those are treated, you remove a huge burden upon my ‘autism’. I have mood, anxiety, compulsive disorders. If you treat those I’m going to have more processing time, better health, I’m going to be a more functional person with autism. I struggle with meaning deafness and some degree of visual fragmentation. If you turn off the overhead lights, speak in bullet points, slow your speech and use gesture and objects I can understand quite well. I deal with Exposure Anxiety but if you sit alongside me instead of in front of me, address the object/issue and not me and don’t fuss, don’t gush, don’t turn up the spotlight, I can BE and not just strive to function.
DAVID MINOSA:How do you define wellness in relation to autism?
DONNA WILLIAMS: Having your health and co-morbid disorders managed, having your personality traits out of the personality disorder range and reasonably integrated, having your body tamed to a degree it trusts you and you can identify with it and read its messages, having your senses work for you more than torment you, having an environment that understands your systems and doesn’t exacerbate or play to your weaknesses.
DAVID MINOSA:Can you give me some examples of how Exposure Anxiety affected your daily life in the context of autism?
DONNA WILLIAMS: My Exposure Anxiety is fortunately far less than in the past. But in the past it would make me avoid, divert from and reject awareness of the need for the toilet, for eating, for drinking, for warmth, for company, so I was appearing to reject the people I liked, appearing to not want things I very much wanted. I would go silent or say things I didn’t mean which would sabotage my communication. I would be unable to leave rooms I wished to leave and unable to stay in those I wished to stay in. I would destroy things I created even though I liked them or was proud of them. I would get rough with people I wished to touch or make contact with. I would be a TV character or animal because trying to interact or communicate as myself would end up all contorted due to Exposure Anxiety. I learned to sing and hypnotise myself out of awareness in order to tame Exposure Anxiety long enough to do something I needed to do.
DAVID MINOSA:How do you see autism in the context of an every busier, every more overstimulating world?
DONNA WILLIAMS: Hmm. It is also a progressively less verbal world, one where typing is acceptable as never before, where one can liase online and that be valid social interaction. The countryside still tames many people with autism, gives them a much needed sensory holiday.
warmly,
Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com
“But in the past it would make me avoid, divert from and reject awareness of the need for the toilet, for eating, for drinking, for warmth, for company, so I was appearing to reject the people I liked, appearing to not want things I very much wanted.”
At 54, I am new to the Asperger’s diagnosis, though I’ve known I was different and challenged though bright most of my life. My life is littered with clues that I’ve been autistic and yet because I was so high functioning and because I did not talk about my challenges, I was mostly labeled odd, brilliant, eccentric, enigmatic, quirky, weird, interesting, different, etc. When people didn’t understand why I did what I did, they’d insert nefarious intentions that went along with their fears and unhealed aspects of their personalities, not with their knowledge of me and my character or what they knew of my difference. I have been most vulnerable to not knowing that someone is not good friend material–that is, people who are more likely than not to turn on me and stab me in the back.
Disabled with an immune illness, I have seen how one time friends used my “quirkiness” to discredit me and excuse themselves from doing the friendly thing of staying connected. (Social isolation is not limited to those who are disabled and autistic however.) As sick as I was when I first became disabled, I felt helpless to intervene in the loss of social contact. It didn’t help that I’ve always had a phone phobia, which no doubt is related to the idea of Exposure Anxiety. I certainly relate to the quotation above.
I am someone with Asperger’s who is a talker, who has fought with myself not to be a talker, which only added pressure to the social anxiety I felt, pressure and anxiety that exacerbated the problem. Just having the diagnosis is helping me to remove that pressure, to remove the anxiety, and to develop new strategies that might serve me (and others) better.
Thank you for your blog.