I received this comment

Severe autism is NOT being discussed and it’s getting real old…this is such bs….everyones ignoring this side to the detriment of their own souls

If Temple Grandin was 2 trying to say ‘ball’ but only able to say ‘bah’ and couldn’t communicate until she was 3, is that ‘severe autism’?  If we add to that that she smeared feces at age 2 and 3 and hated scratchy petitcoats so much she tantrumed does that make her autism more ‘severe’?  An obsessive compulsive personality (see OCPD) geared for achievement and capable of high levels of fixation.  Does that make Temple more autistic than other personalities?   If we add that she was a highly intelligent with enough dyspraxia to have been unable to pronounce speech clearly without speech therapy, sensorily disorganised (commonly occurs in dyspraxia) and was unco-ordinated enough to be misjudged as ‘brain damaged’ how does that shape our view of her discussion of having been ‘severely autistic’?  She was brought up by nanny’s with a temperamental, detached father and a mother busy with her career as a performer and at age 3 she so craved to be part of their dinner party conversations she felt communicatively disabled unable to be part of them.  She was such a high level visual thinker that not only could she think fluently in pictures but she could put those to incoming speech.

It is clear from her interview that her father was quite socially detached.  Could he have had social emotional agnosia – the inability to read facial expression, body language and intonation, if not Alexithymia so common in those with Asperger’s and rendering them far more cerebral, logical in the absence of a functional emotional world?  Did Temple inherit that, rendering her world a cerebral, intellectual one?

And what would an emotive, artistic mother have made of that, of having such a ‘masculine girl’ (and there’s no doubt Temple is a picture of female masculinity) when she expected her to like pretty dresses like her sister did?   Could such gender related expectations complicate emotional and social development if one by nature could never possibly comfortably live up to these whether autistic or not?

Could we see a socially and emotionally frustrated/overwhelmed ‘severely dyspraxic’ child whose natural identity was rather cerebral, even masculine, who had developed complications of autistic withdrawal, attachment disorder and behavioral disturbance?  This is not to say Temple is not autistic.  She is as autistic as anyone formally diagnosed with autism.  However looking beyond the word ‘autism’ makes Temple’s case one of the rich tapestries of autism cases which have us keep true diversity in mind.

But it does raise the question of what do we really mean by ‘SEVERE AUTISM’?

I’ve been to the homes of autistic children deemed ‘severely autistic’.  Some were like Temple would have been, some were like I was.  Some were completely different again.  Working as an autism consultant I’ve had the privilege of seeing how these kids then grew up.   A few who were ‘severely autistic’ at 3 developed functional verbal or typed speech and had outgrown much of their ‘autism’ by the age of 5.  Some had moved from appearing ‘severely autistic’ at 3 to appearing only moderately autistic by their teens.  One progressed to having Catatonic Excitability and Catatonic Stupor and presented even more ‘severely autistic’ by his teens but once hospitalized and treated for this began to develop basic skills.   I also saw ‘severely autistic’ teens who became far more well adjusted, responsible for their behaviors and self help once they were able to type.

In working with hundred’s of children and adults with autism since 1996, I had to research far beyond my own ‘autistic’ experiences.  Through this I learned that by ‘severe autism’ people often mean severe visual/verbal/body agnosias, Speech Aphasia, Apraxia, severe hypotonia, severe Tourette‘s, severe OCD (not to be confused with OCPD)severe Rapid Cycling Bipolar, severe depression and Anhedonia,  Catatonic Exciteability, Catatonic Stupor,  severe untreated gut/immune/metabolic disorders impacting on gut and brain function, extreme learned helplessness and Dependant Personality Disorder, extreme Exposure Anxiety in a pursuing socially invasive environment, rage disorders, people addicted to their own behaviourally induced chemical highs.

We do need to discuss ‘severe autism’.  But we need to discuss the MEANING of severe ‘autism’ versus where severe underlying conditions so isolate and burden the individual, so derail development that they develop significantly disabling ‘autistic defensiveness’, ‘autistic withdrawal’ and develop and behave ‘autistically’.

‘Autistic heros’ should use their public role not to portray ‘their autism’ as ‘the real autism’, ‘the only autism’, ‘the one true autism’ or allow themselves to be waved as a ‘poster child’ for autism or any one-sized-fits-all, but ill-fitting, ‘hope’.  If autistic ‘heros’ have a role, it might be to use their visibility to remind all people to dare dissect the word itself.  That means not fixating on a new stereotypes of ‘autistic culture’ (that’s had enough press and books to last a decade) but open mindedly exploring our vast range of autism fruit salads and the autistic differences these lead to.  Only then will people be able to build their own road maps for their children based not on those of ‘autistic heros’ but on the unsung hero they live with.

Donna Williams, Dip Ed, BA Hons.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

http://www.myspace.com/nobodynowherethefilm
http://www.donnawilliams.net
http://www.aspinauts.com

My own case could be equally dissected.  Born to an alcoholic mother who was from several generations of alcoholic mothers.  My father’s somewhat ‘autie’ mother was the product of two generations of first cousin marriages.  Both of my parents were uneducated, came from poverty.  Addiction, alcoholism, ADHD, bipolar, depression, rage disorders, dyslexia, OCD, Tourette’s, Agoraphobia, Asperger’s, Autism, allergies, gut disorders, cancer, respiratory and ear infections, verbal agnosia (meaning deafness) have appeared in combinations on each side.

I was subject to abuse and neglect from months old.  I was the second child, born 16 months after my brother to a young mother, already struggling with alcoholism, domestic abuse and probably Post Natal Depression who was already damaged from a background of poverty, ignorance, abuse and neglect.

I had immune dysfunction from 6 months old, grew up face blind, meaning deaf, object blind, context blind, disconnected from my body (visual, verbal, body agnosias and the attachment difficulties those would have entailed regardless of environment), dealt with Tourette’s tics since age 2, bipolar since age 3, OCD since age 9, had inherited tendencies toward addiction which had me compulsively trying to trigger extreme emotional states to get high, lived with PTSD and extreme Exposure Anxiety resulting in compulsive avoidance, diversion and retaliaton responses.

I was assessed at a hospital as psychotic at age 2, disturbed by mid childhood, still tested for deafness at age 9 when my meaning deafness was finally understood, and acquired functional speech by late childhood after a lifetime of echolalia.  I was diagnosed with autism in my 20s.  We could call me brain damaged, developmentally disabled due to abuse and neglect, someone with genetic and environmental immune system damage which affected my neurological development and brain chemistry.  Or someone with an ‘autism fruit salad’ born to a family genetically and environmentally predisposed to different elements which only together in enough combination would have resulted in autistic withdrawal, autistic development.

Adopt out my parents at birth to other environments.  Would that pair still have brought their own ‘fruit salads’ to the table resulting in a child with the same issues, albeit perhaps less complicated?

Two of my first cousins on my mother’s side were adopted out at birth.  Both found their birth families in their 20s.  Both committed suicide.   Maybe what we inherit physiologically, genetically, would play out regardless.