As an autistic woman, I have had many challenges and problems to solve in my life. There were developmental milestones that I struggled to acquire as a child. There were plenty of misunderstandings in social interactions. There was the anxiety of changes and transitions. The sensory issues. But the biggest of them all has always been the social stigma. That one is a demon that may take many forms: a potential employer turning an applicant down for their poor body language, a school refusing to accomodate a student’s needs, or a judgmental look in a passerby’s face when a child has a meltdown in a supermarket. But none of them is worse than when it comes from someone close to us.
All my life I have suffered from my own family’s stigma against disability. Now, I feel bad about writing this, so I will make a short clarification before continuing. My parents are great: they care about me, they show me their love, they have always been there to support me when I need them and I know that they only want the best for me. However, the social stigma about disability has compromised their parenting decisions many times, and it had many unwanted effects on our relationship.
I have been diagnosed with PDD-NOS, a kind of autism, when I was still in preschool. I was fully verbal, knew my numbers and colors, and loved being read to and learning new things. Most of my symptoms seemed to be behavioral: frequent out-of-control meltdowns, refusal to be toilet-trained, lack of interest in playing with my peers, and so on. So my parents found it really hard to think of autism as a “real disability”, at least in my case. They thought I was just having behavioral issues, which would disappear when I grew up. Fortunately, in spite of this belief, they agreed to send me to a child psychologist, with whom I had weekly sessions for many years.
The stigma probably affected my life ever since the day I was diagnosed, but it was not until I was in first grade that it blocked my access to services and accomodations. I was going to the only mainstream school in my city that accepted students with disabilities since the nineties. In preschool and kinder, the teachers had tried to control my meltdowns and difficult behaviors by themselves. They had had it easier because there were many teachers in every classroom and the expectations students had to meet were not very demanding. Things were different in first grade. Now we did not have three teachers anymore: there was only one teacher for us thirty students, and she had a syllabus to follow. She could not spend half an hour every day preparing me for a transition, trying to de-escalate a meltdown, or guiding me through my interactions with the other children.
The solution the teacher found was taking me out of the classroom in time-out every time I “misbehaved”, which, of course, happened nearly every class. And when my mother picked me up from school in the afternoon and asked me what I had learned or done that day, I never had a clear answer. My mother would then proceed to check my schoolwork. More often than not there was nothing new, as I had spent my day crying in time-out instead of learning and writing things. That happened almost every day during the first month of first grade, until my parents had a talk with the headmistress and the teacher.
My parents were advised in that meeting to get a one-on-one aid or teaching assistant. They would need to hire one to help me through my school day and teach me how to interact with the other children. My parents argued that hiring such a teacher and paying her out of their pockets would be almost unaffordable. But they would not really need to pay for it themselves: in my country, Argentina, health insurance companies are required by law to pay for any disability services their clients may need, and that includes special education services. The only thing they would need to get the service for free was getting me a document called Certificado Único de Discapacidad (Certificate of Disability), which was not hard to do for an autistic child.
It sounds ideal, doesn’t it? They could get all the services I needed, even a one-on-one special education teacher, completely for free. I could stay inside the classroom, in the same school and with the same classmates I had known since I was a toddler. There would be a specialist helping in any upsetting situations, and my needs would be seen to.
But it did not happen. My parents never got me a certificate of disability. Because, in their eyes, I was not disabled. Disability was a word for wheelchair users, for blind people, for people with Down’s syndrome. To them, it could not apply to their bright, stubborn, pretty and physically able-bodied child.
As a consequence of this stigma, I was deprived of special education services and had to move into a new school in the second month of first grade. The new school was smaller and I only had fourteen classmates, but my behavior was still impossible for the new teacher to manage. Things did not work there either and I changed schools again in third grade, where I was even more uncontrollable. All that drama might have been avoided if my parents had been aware that autism is a disability and it is not shameful to get services for it.
The other problem stigma caused in my upbringing was that, as my family did not acknowledge my disability, they believed my inapropriate and unusual behaviors were deliberate attempts to irritate or embarrass them. I have been harshly criticized for stimming in public, for being blunt, for not paying attention, for being “lazy” and for asking inapropriate questions to the mothers of my classmates (“are you pregnant?” was my favorite when I was eight and my teacher became pregnant). They were sure I was behaving like this on purpose, and acted accordingly. The scoldings, groundings, punishments and time-outs quickly helped me learn to see myself as a “bad child”.
Sometimes I wonder whether my life would have been different without this crippling stigma. I know it is useless to waste time thinking about the “what ifs” of the past, as those hypotheses cannot be proved, but I would like to think that at least some of my teenage problems with low self-esteem and depression could have been prevented by removing the stigma.
There is one last way that stigma has affected my life. It concerns my awareness of my diagnosis. Most parents whose children are diagnosed with autism at a very young age do not tell them about it straight away. That is fine. I doubt a child of four would understand what autism means, anyway. But my parents went further than that. They made no plans to ever reveal the diagnosis to me. They did not tell me when I was six and had to change schools. They did not tell me when I was ten and realized I was the only girl in my class who had no friends. They did not tell me when I was traumatically bullied in seventh grade. They did not tell me when I was considering dropping out of high school (or maybe even killing myself) at the age of seventen. They only told me when I was twenty one, because I dared to ask.
They had feared that knowing my diagnosis would be bad for me. It could make me think of myself as (God borbid!) “disabled”. It could deeply harm my self-esteem. It could make me realize I was different from all the other children. It could allow me to use it as an excuse for my mistakes. It could hinder my development and kill my hope for the future, which would translate into less motivation and less effort, and there would be a self-fullfilling prophecy leading to an epic failure.
So they did not tell me. And I did not think of myself as disabled. I thought of myself as a “bad child who does everything wrong”. It deeply harmed my self-esteem. I realized I was different from all the other children, and I didn’t know why. I had no excuse or justification, but my low self-esteem still worked as a crutch, because I thought I just couldn’t do any better. And it almost did kill my hope for the future, and I am still struggling to find my way into a happy and healthy adult life. Keeping my diagnosis from me served no purpose at all. It led to the very things they were trying to prevent. And it was all a result of disability stigma.
I wonder how many other people’s lives out there have been affected by stigma, as mine has. How many of them have been judged for their disability by their families, their teachers, their classmates, and even complete strangers. How many of them have been denied special education services because someone decided they were not disabled enough to need them. How many were not granted accomodations in the workplace because somebody else was convinced that if they were “high-functioning” enough to be working there, they had no need of any special treatment. Or on the contrary, how many have been excluded from a job opportunity because someone else wrongly assumed that “people with disabilities can’t work”.
For all of them, (and also for myself) I say: stigma against disability needs to stop. We want to be accepted, respected and supported to be active members of our communities. We want equal opportunities. We want to learn, to work, to love, to be loved and to be able to love ourselves. We want our lives to be the best they can be. And for all that to happen, we need stigma to end.