It was the mid 1980’s and even the highly questionable term 'High Funcitoning Autism' didn’t yet exist. Highly inaccurate though it is, I mention it because back then even the concept of Autism without obvious cognitive and physical disabilities was not thought possible. So there
were almost no health professionals to offer any assistance or insight into people like me, whose struggles were fought behind the walls of my mind. Inner struggles, wreathed in shadows, hidden away for decades, without even my understanding of how and why they existed. As for parents, in those days they were conditioned to
avoid even the thought of it. Having a disabled child was social anathema. The social stigma attached to Autism meant that
many went out of their way to deny it in their children.
Those whose learning difficulties were so numerous as to be obvious were told
they would not cope looking after them at home and many were advised by health
professionals that the best thing would be for their children to be
institutionalised, which sadly some did. This was very much sweeping under the
carpet what they saw as a insoluble problem. So families were divided and
children left to the mercies of a state that did not understand how to help
them, often doing more harm than good.
The existence of, shall we say, those autisitcs who were better able to blend in and whose inner struggles were missed by the medical profession went unacknowledged. Parents who questioned and brought up problems to health care professionals were often labelled as part or the even the cause of ‘the problem’. Terms such as ’refrigerator mother’ were coined by Doctors to imply that parents themselves had caused their children to be Autistic by not showing them love. This general lack of research and lack of understanding would endure for years to come.
And so a generation of boys and even more undiagnosed girls were left without support and many were forced to mask their disability, in an attempt to fit in with the neuro-typical world around them. As they grew older, the severe stress would manifest in a host of mental health issues. Even more importantly they somehow always feel on the outside and the fringes of society, looking in.
For some, their pain and frustration at not being supported or understood would lead to their behaviour being deemed unacceptable, challenging and dangerous. It would take decades for this group of people to become recognised by the rest of society and to be offered some kind of inclusion in it. Nowadays there is an acknowledgement that somebody who does not present as obviously having a learning disability can be Autistic too.
The labels of 'High and Low Functioning' imply severe and mild, which is to my mind a flawed system. A person that fits any combination of criteria to achieve a diagnosis may be just as severely impacted in their life, no matter what list of conditions may come alongside their autism. Every person's Autism is unique to them. As the saying goes in Autistic culture: when you've seen one Autistic person, you've seen one Autistic person. In other words, what may help one autistic person, may not help the next person.
I am part of that history and it is part of my story. For I am one of that hidden generation of Autistics. Putting on a mask to survive the necessities of life. Living behind the walls I had to put up, to protect my identity and all the vulnerabilities that came with it. Protection from others and for a long time, even withholding the knowledge from myself. Holding back a flood of distress, behind the walls of a dam.
Like comic book characters from a different dimension, we Autistics have learned to put up our defences by day, donning our masks, to cover over our irregularities. We hide in plain sight, seeking to be a part of the world around us. A part and yet also apart, so to speak.
I recall the nights when memories would constantly replay in my mind, making sleep difficult. I would obsess and analyse over the past. Snippets of stressful social situations, of mistakes made and the traumatic emotions felt at the time that cut like a knife. Slowly over time, I learned to turn my face away from these impossible problems of the past. Removing myself from stressful situations helped with this, but at the cost of a life with few social interactions outside my small family circle.
Now that I am aware of who I actually am, I use the social media term #ActuallyAutistic. It encapsulates the whole meaning of a generation’s hidden struggle, to seek and to find identity and a community of our own.
The existence of, shall we say, those autisitcs who were better able to blend in and whose inner struggles were missed by the medical profession went unacknowledged. Parents who questioned and brought up problems to health care professionals were often labelled as part or the even the cause of ‘the problem’. Terms such as ’refrigerator mother’ were coined by Doctors to imply that parents themselves had caused their children to be Autistic by not showing them love. This general lack of research and lack of understanding would endure for years to come.
And so a generation of boys and even more undiagnosed girls were left without support and many were forced to mask their disability, in an attempt to fit in with the neuro-typical world around them. As they grew older, the severe stress would manifest in a host of mental health issues. Even more importantly they somehow always feel on the outside and the fringes of society, looking in.
For some, their pain and frustration at not being supported or understood would lead to their behaviour being deemed unacceptable, challenging and dangerous. It would take decades for this group of people to become recognised by the rest of society and to be offered some kind of inclusion in it. Nowadays there is an acknowledgement that somebody who does not present as obviously having a learning disability can be Autistic too.
The labels of 'High and Low Functioning' imply severe and mild, which is to my mind a flawed system. A person that fits any combination of criteria to achieve a diagnosis may be just as severely impacted in their life, no matter what list of conditions may come alongside their autism. Every person's Autism is unique to them. As the saying goes in Autistic culture: when you've seen one Autistic person, you've seen one Autistic person. In other words, what may help one autistic person, may not help the next person.
I am part of that history and it is part of my story. For I am one of that hidden generation of Autistics. Putting on a mask to survive the necessities of life. Living behind the walls I had to put up, to protect my identity and all the vulnerabilities that came with it. Protection from others and for a long time, even withholding the knowledge from myself. Holding back a flood of distress, behind the walls of a dam.
Like comic book characters from a different dimension, we Autistics have learned to put up our defences by day, donning our masks, to cover over our irregularities. We hide in plain sight, seeking to be a part of the world around us. A part and yet also apart, so to speak.
I recall the nights when memories would constantly replay in my mind, making sleep difficult. I would obsess and analyse over the past. Snippets of stressful social situations, of mistakes made and the traumatic emotions felt at the time that cut like a knife. Slowly over time, I learned to turn my face away from these impossible problems of the past. Removing myself from stressful situations helped with this, but at the cost of a life with few social interactions outside my small family circle.
Now that I am aware of who I actually am, I use the social media term #ActuallyAutistic. It encapsulates the whole meaning of a generation’s hidden struggle, to seek and to find identity and a community of our own.
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