Wednesday, 7 January 2015

The Evolution of Autism Awareness Over a Century, as Shown Through Four Generations of One Family

Photo courtesy of Luke Hayne, Autistic Graphic Designer

Proud to present another guest written Days of Whine and Rose article. 

Written by my son, Christopher Medeiros. XO

Autism Spectrum Disorder (ASD) is the umbrella term for a group of neurodevelopmental disorders that share a common deficit in the areas of social and/or communication development. The word autism was first coined by Eugen Bleuler in 1911, however it was not used in medical circles until much, much later. Autism was first described scientifically by Hans Asperger and Leo Kanner (independently) in the late 1930s, The terminology and diagnosis however only become prevalent after 1980 with the publication of the DSM-III. It was then that autism became a diagnosis in its own right. Prior to that time an autistic person would have been assessed with mental retardation or childhood schizophrenia ***

In 1971 a report was issued by Walter Willinston to the Minister of Health. "The Present Arrangements for the Care and Supervison of the Mentally Retarded (in Ontario)". Number one on the statement of principles and objectives states: 

The problems concerning mentally retarded persons cannot be viewed in isolation.Civilisation must provide every child with the opportunity of developing to his optimum potential. It has an obligation to all handicapped alike- the crippled, the deaf, the blind; those who are mentally retarded or emotionally disturbed; those with cerebral palsy or perceptual handicaps- to make certain that each is educated or trained so that he can reach his true potential. Thereafter society must provide each with assistance, protection, opportunity and shelter as will enable him to take his place as a contributing member of the community and ensure to him a decent standard of living so that he can walk through life with dignity 

However those words were not heeded for many decades. Today society is much better at accepting and accommodating those that are seen as different. Society has gone from mislabelling autistic individuals with mental health disorders to differentiating autism as its own separate entity and from hiding autistic people away in institutions to celebrating neurodiversity in the span of just 100 years. 

The following is a look at one family’s experiences with society’s perceptions of autism over this period.

photo courtesy of Wayne Pollard
Mr and Mrs Alfred Jackson had five children. The second eldest, a son named Russell, born in the early 1910, would now receive a diagnosis of autism. At the time, he was never assessed. They were a poor family and there was no such thing as universal health care at the time. All medical visits meant paying a large fee. There was also the realisation that if their son was assessed as "feeble-minded", the common term at the time, he would be removed from their home and placed in a sanatorium. Instead the family chose to keep him at home, hiding him from most of society. There were no laws enforcing that children attend school, so Mr and Mrs Jackson were able to keep him home without authorities becoming involved. They lived in a small close knit community outside of Collingwood, Ontario. A community that stood together. Russell was accepted there. The rest of society, however, would not have been as accommodating. When Mrs Jackson became very ill, with what was likely cancer, Mr Jackson’s sisters got together to figure out how to ensure Russell would be cared for. At the time, the late 1920s, when the mother died, children were often placed in orphanages because father’s were deemed unable to care for their children alone. Although Russell by this time was nearly 20, he was completely non-verbal and had limited self care skills. He needed, in other words, someone to look after him. Mr Jackson’s sisters agreed Gladys McKinney (nee Jackson) would take in Russell. In the end, thanks to a supportive small community, Alfred was able to keep Russell with him. The only outings outside their home were to Aunt Gladys’ home, and Aunt Gladys and her children were frequent visitors. 

Evalena McKinney, Gladys’ daughter, clearly recalls visiting Uncle Alf and Russell the day Russell uttered his first word. He was in his mid to late thirties, and Gladys had taken Evalena to visit the family. Russell had not known they were coming. Russell was upstairs when they arrived, but had peeked over the railing. When he saw them he clearly said “Aunt Gladys!”. Everyone cheered and cried. Over the next few years his vocabulary increased, but without an accepting society or access to disability pensions or services, Russell still spent his days being looked after rather than engaging with society. Society was not willing to accept people who were “different” living in their midst. When Alfred died, Russell’s sister took him in, and there he lived until he died. 

Within society, but not allowed to be a part of it.

Phillip and Lori Pollard
In 1952 Evalena Pollard (nee McKinney) gave birth to her third child, Phillip. He had a host of health issues as an infant and frequently developed pneumonia. At one point baby Phil stopped breathing and was rushed to hospital, but not before suffering an acquired brain injury. In a few short years he would be labelled mentally retarded, but there was more at play. He never spoke or uttered sounds. He wandered. He loved to spin objects. He rocked. Later, as an adult, he would be reassessed as Autistic with Mental Retardation. The Pollard’s lived in Toronto, but their neighbourhood was as close knit as Russell Jackson’s community had been. So even though they were told to place Phillip in an orphanage, they kept him with the family. By this time, laws had been enacted requiring all children to attend school. But schools were not set up to accommodate non verbal people like Phillip who had no toileting skills or awareness of danger. Eventually he was given a spot at the “school” attached to the building on Beverley Street that housed "The Association for the Mentally Retarded". 

This school had a reputation of suggesting that children attending be placed in institutions, but it was the only school accepting anyone with mental or developmental challenges of any sort. You placed your child in this school, or your child was removed from your custody. As time went on, the principal of Beverley Street school contacted Phillip’s parents, Evalena and her husband Frank Pollard, just as they had with most of their charges. Mr and Mrs Pollard were given the ultimatum. Place Phillip willingly in Huronia Regional Centre in Orillia and be allowed pre-scheduled visits and updates on his care, or he would be removed from them and placed in Huronia or another institution with all their rights as parents removed. 

Phillip was seven years old. 

Frank and Evalena made the only choice they could, to place Phillip in Huronia but still be able to be in his life, if even minimally. 

Over the years Phillip was exposed to serious sexual and physical abuse within the walls of Huronia. Parents throughout the years, Frank and Evalena included, brought their concerns about their children’s welfare to the management of Huronia and to other authorities, but were dismissed. The residents of Huronia were not considered people to society at large, so their welfare was of little to no importance. Phillip spent the majority of his short life being exposed to horrendous cruelty simply because society still could not accept those with mental or developmental health challenges living within their midst. Lori Pollard, the youngest of Frank and Evalena’s children, recalls her parents instilling the notion that all people are people from as far back as she can remember. Her parents would bring Phillip home for visits as often as they were allowed and refused to keep him hidden. But it was never easy. Society still saw him as an aberration, not a person.

Chris and Eric Medeiros, circa 1994
This discord between her family's views and those of society would colour Lori’s perceptions when she had her own children. In 1990, Lori Medeiros (nee Pollard) gave birth to her first child, Christopher. Me. As an infant and child I exhausted her with my lack of need for sleep and extreme activity level. I was extremely bright, surpassed all physical developmental goals (sitting up, crawling, walking, climbing, jumping) long before my peers and had an extensive vocabulary. 

But I could not stray from routine. If my mother wanted to walk a different route to the local store, this change would be so upsetting, so physically painful for me, that I'd meltdown for up to an hour. 

I didn’t, and still don't, understand how rules could be flexible. If it was okay to pick flowers in a field, why could I not pick flowers from someone’s front garden? I loved to play sports, but turn taking or playing a team sport were impossible for me. 

I was diagnosed at 3 years old with ADHD and my mother was given a ritalin prescription for me. She refused to fill the prescription. Instead she went to the mental health library located on College Street in Toronto, posing as a University of Toronto student in order to gain access. The internet was not a place to obtain information at the time, and local libraries did not have anything in terms of reliable medical or developmental resources. She researched ADHD. Some of the symptomatology fit me, but some didn’t. At the same time I was diagnosed, my brother was born, Eric. Eric was a traumatic birth and my mother was treated immediately after his birth for physical shock. Newborn Eric slept for twelve straight hours. It was later discovered through an MRI that he had not been sleeping. In fact, he had been in a hypoglycaemic coma and had suffered brain damage as a result. Where I had been talkative and restless and active, Eric was calm and quiet. He needed very little soothing and was quite content on his own. My mother was grateful of the respite, but concerned, as this was not normal infant behaviour. Eric did not cry. Not once. Until he was six months old. And believe me, as a 3 year old, I'd pinch him to try to make him cry (don't tell my mother).Then from six months on he would cry as if in extreme distress for hours on end. At this point he also started to throw his body backwards violently if anyone other than our mother held him. Mom took him to the emergency room continuously but was always sent away with cautions to be less ‘fretful’ about her baby. When by nine months Eric still hadn’t uttered a single sound, not even "Mama" or "Dada", my mother consulted our family physician. An old time GP, who had been with the family since the days of Gladys McKinney, Dr Disenhaus did not dismiss Mom’s concerns the way the hospital did, and he sent her to specialist after specialist. Finally at three years three months Eric was diagnosed with autism at the Surrey Place Centre. Autism was not a common word in the 1990s. Mom was told that by the time Eric hit his teen years he would likely be institutionalised, that he would likely never be out of diapers and surely never speak. She left Surrey Place without any information, support, guidance, funding or services. She decided to make another visit to the mental health library. Mom posed once again as a University of Toronto student to gain access. While researching autism and autism therapies she started to notice that one particular form of autism, Asperger’s Disorder, seemed to fit me to a T. Things started to make sense. There still were no services for autism, but there were services for ADHD, so she did not take me to be assessed until much later in order to make sure I kept the resources I had. Eric however, still needed something, anything. But there was nothing. So she trained to be a therapist herself in order to give Eric, and me, the skills we needed. Eric is 21, and still lives at home, not in an institution. He is semi verbal and can cook his own meals. He is a pain in the ass like any brother, but I can't imagine life without him around. He will always need someone to care for him, but he certainly has progressed miles beyond what was predicted and will continue to progress. He is, and always will be, a vital part of society. When I was in elementary school, the requisites for being assigned a teachers assistant changed, and you needed a formal diagnosis. Mom took me in at this point to be formally assessed. I was diagnosed with Aspergers Syndrome with OCD traits. I recall being so intrigued by what the doctor was telling me, and I asked her numerous questions. Mom jokes that she didn't have to ask a thing!! By this point services were starting to become available, but only to those who fought for them, so my mother threw herself into advocating. She was able to get funding and services for Eric and I that are now common place, but were not even thought of, or were just pilot projects at the time. Schools were now open to those with developmental challenges, but only in segregated classrooms. As I had an above average IQ those placements were not appropriate for me, so my mother forced the school board to provide quiet rooms, an education assistant to keep me on task or accompany me when I needed to escape from sensory overload. She took a job as school yard supervisor to protect me from the ever present bullies. Thankfully, schools now all have bullying prevention programs, and the incidences of autistic people being bullied are going down. 

I just graduated from college, on my way to becoming a  master plumber, despite my grade school principal’s insistence that I would never be productive in society. This article itself is based on a sociological study I submitted while at college. I was able to write the report, and in it reference myself as autistic, without fear of discrimination. In fact, it was very well received.

A family member recently contacted my mother for information on getting their child, four generations removed from Russell Jackson, assessed for autism. The family member themselves even wants to be tested. Mom was able to send link after link after link. Information, services and resources at the click of a mouse. There was no fear, nor apprehension. There was only joy at the thought that 'yeah, things make sense now".

We’ve come a long way from hiding your child to make sure they weren’t forced into an institution.

Can’t wait to see how far we will go from here.


Full Spectrum Mama said...

AMAZING STORY - and full of hope. I see it just from me to my son - WORLD's different - we still have a ways to go though. Posts like this add to the progress...

DrMike said...

Christopher, what an excellent and interesting story. Thank you so much for sharing.

Dr. Mike