I had a letter from a parent asking me about cure and where I stand.  Here’s my reply.

Hi Donna

I am a parent of a nine year old boy who is severely autistic. I am treating him biomedically with various supplements and homeopathy.  I am also a member of your autism list.  Could you please answer a question for me – we read stories sometimes of parents recovering their children from autism. Someone recently suggested that these stories could be insulting to people with high functioning autism and Asperger’s syndrome who are happy with the way that they are, and do not think that they have anything to recover from.  What is your view on this please?
Thank you
Karen

Hi Karen,

thanks for your letter.  You might gain a better picture of my view from the articles  on my blog at http://www.donnawilliams.net .

Thing is I’m supportive of treating any significantly disabling physical and psychiatric disorders any person has and if that person has autism, so be it.

For example, I had two primary immune deficiencies, a functional B12 deficiency, severe magnesium deficiency, type 2 diabetes, gluten intolerance, severe dairy allergy, Salicylate and phenol intolerance, multiple food and chemical allergies, systemic Candidiasis and a systemic inflammatory state.  Some of these issues contributed to a very high viral load and undigested proteins and viruses crossing into my brain triggering the production of a dangerous neurotoxin called Quinolinic Acid which progressively interferes with Seratonin metabolism and also destroys parts of the brain (I  had testing which showed this QA in my urine and QA is only produced in the brain and does so in response to toxins crossing into the brain, usually protected by a good blood brain barrier… healthy people would show no QA in their urine so if it is there it shows the brain is producing it and the blood-brain barrier is not intact).

So whilst I can see my parents each had mood, anxiety, compulsive challenges, mine were in the extreme enough to be treated with medication and it’s my view that without that I was a good candidate for being one of the 15-20% of people with untreated mood disorders who kill themselves through suicide or misadventure.

So I believe in treatment of all those things and if someone with autism has such physical issues to a degree it will reduce the quality of their life or their longevity or seriously impede their development, then I belive that if treatment exists for their physical issues then they deserve a chance at that.  I wouldn’t leave a dog infested with fleas either and I don’t confuse the fleas with the dog.

Saying that, NOT ALL PEOPLE WITH AUTISM have physiological or psychiatric disorders.  And it’s also a matter of degree.  If someone has some physiological issues, those may not be disturbing enough or disabling enough for them to want treatment, and I respect that, provided the non-treatment of their issues does not mean they’re endangering others either.

Now, autism can also mean severe aphasia, apraxia, Selective Mutism, Verbal/Visual/Body agnosias or severe visual perceptual fragmentation among other things.  And if I met deaf-blind Helen Keller when she was a terrified aggressive child with no means by which to make sense of her world or communicate, I’d certainly help her develop some.

The same is true re autism.  If someone has severely disabling communication, sensory perceptual or sensory issues, I would help them develop strategies and management for those.  If, as a result, they became less obviously autistic, then so what.  The point is I wouldn’t do this because I demonised autism, but because helping people to develop means they later have choices about what they want to do with that development.  If Helen decided then to never sign and wished to revert to her feral state (provided she does no harm) instead of becoming a teacher and author as she did, well, she is also a human being with choices.

Autism can also be a big part of one’s natural personality traits which function ‘autistically’ when under pressure.  We can all become extremes of what we naturally are.  If we are those for long enough they can be called personality ‘disorders’ because they are imbalanced to a degree we may find ourselves with both great strengths and weaknesses.  For example, I’m idiosyncratic, vigilant, solitary, artistic.  So in the extreme, however, I could look Schizotypal, Paranoid, Schizoid and Cyclothymic which combined could mean I am off in my own world, socially phobic with Exposure Anxiety, unable to share my emotions directly and distressed by the intimate initiations of others, and wildly emotionally fluctuating whilst caught up in sensory fixations.

All of those things could be incredible strengths but equally would be difficult for many families or communities to easily accomodate.  And I have suffered badly from the inability of others to accomodate personality trait extremes I can’t change and which I actually value as part of my selfhood, traits which manifest autistically under stress and in my case that stress is fed by information processing issues and managing mood, anxiety and compulsive disorders which put pressure on my personality.

So I don’t feel my personality needs treatment, but if I can have strategies and adaptations with which I can most healthily manage it and more easily gain positive acceptance and inclusion in my community, sure, I’m happy with that.  But if people want to harp on at me as to why I should have a more ‘normal’ personality they are being ignorant and supremist and I wouldn’t harp on at them as to why they shouldn’t have their more stereotypically non-spectrum personalities.

So, hope that sort of sums up my stance.  Many things get called ‘the autism’.  Many things which shouldn’t.  Many things increase the presentation of the ‘autism’, some of which can be physiological disorders which deserve treatment or sensory perceptual or communication challenges which deserve humane strategies and adaptations.  So to divide into treatment or culture camps is way too simplistic.

I don’t seek cure, no.  I do believe in treatment but I also believe in respect.  I don’t believe that non-spectrum people are neuro-typical as all of us have some neuro-diversity.  I don’t believe that people without disabilities should be on disability benefits.  I believe that one either has disabilities or one doesn’t.  If people without disabilities have autism or Aspergers and are unemployed, then that’s the benefits they need to be on and effort should be made to create adaptive environments so they can best function and live as best they can.

In a nutshell, I’m neither curist or culturalist.  I am an egalitarian who believes in respectful advocacy and diplomacy.  I also respect that if someone feels their autism is not disabling, then we can accept that is their reality.  I do feel, however, that a diagnosis of Asperger’s shouldn’t be a fast track to disability benefits if that person does not see themselves as having a disability.

And me?  Am I disabled?  On a diet which suits me, medicated for my psych challenges and using adaptations for my sensory perceptual and communication challenges, I would say I struggle with many tasks, situations, interactions, communications.  But mostly I can get by.  I am, however, unable to manage in mainstream employment (I tumble and lose chunks of what I see, hear, read, struggle to track time, sequence, modulate etc and become overwhelmed/overwhelming, confused/confusing).   I am not on disability benefits because I have developed self employment with the skills I have (autism consultancy, giving presentations, arts), but an assessment would likely find me to be ‘disabled’ (my IQ after getting my university degree was under 70 due to language and visual processing issues).

Unfortunately the only non-spectrum people who have healthily befriended me and coped with my differences have largely been those who work with people with autism, have relatives on the spectrum or have related challenges themselves.  Mostly people don’t ‘get’ me and my best efforts seem never enough for them.  Hence, I continue to try and break down the barriers.   I also know many very nice non-spectrum people who treat me well but I don’t know how to start or maintain verbal friendships so these healthy contacts don’t really advance to friendship.  I sometimes then resent my challenges, but I am so naturally solitary and artistic that that resentment is short lived and I enjoy my own world in any case.

Warmly,

Donna Williams, Dip Ed, BA Hons
author, artist, singer-songwriter, screenwriter
http://www.donnawilliams.net
http://www.auties.org