Various combinations of mood, anxiety, compulsive disorders, addiction, rage, dyslexia, ADHD, Asperger’s, autism, suicide, Crohn’s, Colitis, Coeliac, Diabetes, eczema, asthma, croup, hives and allergy rashes all run in various side of my family, going back generations on my father’s side.
I had jaundice at 6mths old followed by chronic infections. By 2 years old in 1965 and after measles and mumps (no MMR in those days) I was (according to my father) put into St Elmo’s Private Hospital in Brunswick for a 3 day observation where I was tested for deafness and leukemia, noted as having no response to pain and on the basis of self injury, assessed as a ‘psychotic infant‘.
At age 9, now labeled on the school records as ‘a disturbed child‘, I was still being tested for deafness and still on regular antibiotics for chronic infections, my family and school finally understood I wasn’t deaf but meaning deaf, and gestures and representational objects with slowed speech became more widely used and I was left a typewriter. In 1973, aged 10, together with my younger brother who was 3, I was put on zinc, C and multi-vitamin/minerals. My receptive language went from 10% to 50% and I began to type word lists, then ‘poetry‘ and acquire ‘functional language’ (previously fitting Semantic Pragmatic Language Disorder). By age 11 I could string relatively understandable sentences together (instead of songs, jingles, advertisments and TV scripts) and by 13 could do litanies.
In my teens the hospital went through three slides of blood to find a white cell and in early adulthood I learned I had two primary immune deficiencies, got treatment for gut, immune, metabolic disorders, nutrient deficiencies etc for several years. As an adult now diagnosed with autism (I learned from my father that it had been mentioned since I was 10 in 1973 but formal diagnosis was 1991) I had patterning, cranio-sacral therapy, tinted lenses for a visual perceptual disorder and hypnotherapy for chronic anxiety. Finally, a small amount of medication treated what was left of once crippling mood, anxiety, compulsive disorders and allowed me for the first time to come off expensive immune boosters and stay healthy ever since. Today my receptive language is about 70%, enough to converse, I have adapted to a degree of functional agnosia and face-blindness and stick with a diet (GF/CF, low salicylate, low phenol, low sugar), supplements (omega 3s, glutamine, C, zinc, chromium, selenium, calcium-magnesium, mega B, B12) and (minor) medication (atypical antipsychotic used as mood leveler) regime. I learn kinesthetically (hands on, physically with language demonstrated via gestures/actions), musically (rote and rhythm) and logically (systems) and struggle to learn visually or verbally. I have a happy, whole life. I’m still autistic, just not SO autistic. My personality too, is more autistic in style than many, and I have no desire to change that, on that level, I am who I am.
Not all people with autism have my physical, sensory-perceptual, language processing, neurological integration or co-morbid mood, anxiety or compulsive disorders. Most of these issues run on one or both sides of my family. I feel that what I inherited was the combined impact of the challenges of both my parent’s sides of the family and that under certain environmental conditions, these things expressed themselves in early infancy, causing the developmental breakdown that presented as a ‘psychotic infant’, disturbed child, autistic adult.
Autism is ONE word, but underneath it is many things. For SOME, including me, a large part of that is physiological, including the original sensory-perceptual and language processing deficits and part of the co-morbid disorders. But we need to distinguish this from personality trait collections which respond ‘autistically’ under chronic stress.
No one interest group should co-opt the term autism, even though it may be valid to talk about physiological autism versus autistic presentation or autistic response patterns. By such a distinction we can know where treatment is required and where acceptance, understanding, advocacy and adaptation are all that’s needed.
… Donna Williams *)