Autism is not behavior, it is not your senses of hearing, touch and vision, and it is not a disease. It is a way of being in the world and experiencing the human condition that transcends how your physical body works, or in my daughter’s case, how her physical self challenged her. There is no cure for being human.
By Cheri Rauser
My daughter just turned 19, attends a polytechnic university part-time and has worked at a couple of minimum wage jobs, is planning her first tattoo (visible, like any self-respecting urban hipster), sings in a youth choir, is studying to be a teacher and demands to live on her own terms. Sounds like a pretty typical young adult, right? In addition, she performs with an adapted synchronized swim team, attends a structured Friday evening social group for teens and young adults with disabilities, and would consider that I had abandoned her if asked to spend an evening or night alone at home.
She manages her money, but does not see the big picture, often does not remember to take her anxiety medication unless prompted, needs monitoring to perform regular hygiene tasks and if left alone would not buy food or prepare it regularly nor clean the space she occupies, ever. She is very attached to mom (that’s me) and requires my presence in the home in order to stay regulated. If I go out in the evening, she needs to have someone with her or go to her father’s home. On the other hand, I’ve never had to monitor homework, she is able to memorize and follow any complicated schedule that involves work and school commitments and has been making and following an established career plan around education since Grade 7. She embodies the notion that: “If you’ve met one person with autism, you’ve met one person with autism”.
I quickly learned, well before my daughter’s privately funded and official autism diagnosis at age 9 ½, rather than at age 6 (thanks to those mainstream gatekeepers) that when you are parenting an autistic child, there are two options. You can follow the instructions handed you by the experts and enforced through the autism mainstream, or plow your own field. If you choose the latter approach of alternative curriculum, sensory, hearing and vision therapy, social skills instruction and autism acceptance (not tolerance), the payoff is both huge and positive. But, in doing so you have effectively cut yourself off from the mainstream autism community along with the considerable emotional and social supports that come from having membership in any community.
Our autism journey was made difficult, not by autism, but by those whom I characterize as the gatekeepers of the ‘autism mainstream’. Once anything is normalized in culture then humans try to ensure that everyone follows the ‘rules’ for inclusion. Autism is now part of the mainstream, whether you are autism accepting or looking for the cure, we are all pretty much in agreement that autism is a fact and everyone knows someone who knows someone…. You get the picture. A critical mass of autism industry folks have decided who fits into the accepted definition and whom do not. My daughter does not.
Critical mass is not the majority but is defined as “the size, number, or amount of something that is needed to cause a particular result.”  As is often seen in dysfunctional social systems, it takes only a few people to create critical mass for a particular agenda. I believe that conformity to the autism mainstream formula can lead to lack of choice for communities, families and self-advocates and exclusion from the autism community for many people who are autistic. This result ensures that their families don’t realize there are choices beyond the conformist mainstream. A self-perpetuating cycle. Internalized autism phobia cuts a cross-section through our society: neurotypical, disability and autism-focused: driving the autism mainstream agenda.
Helping to perpetuate and codify the autism mainstream agenda is the notion that there are different categories of autism. These categories are used by: some to provide financial and therapeutic supports and by others in the community: to include or exclude one another. Some parents don’t want their child identified as autistic, preferring asperger’s: as if being autistic were a painful brand. Others mistrust the aspie in their midst as another version of the excluding neurotypical. We need to stop thinking of autistics as anything other than human. Just as neurotypical people display a range of intelligences, interests and abilities, so do autistics.
We were told that an autistic person was not a child who could function in more than one language, who could always find Waldo and sang in a choir, who read books and could focus on her school work when not overwhelmed by her sensory modalities. Not being able to enter a noisy elementary school classroom and put her things away without having a meltdown and who hit other children when they ‘touched her’ was a behavioral problem requiring drugs. If you agreed to that approach you received support in the schools, if you did not you were ‘encouraged’ to: leave. So we left, and never looked back. I was always afraid of turning into a pillar of salt.
People rarely get that my child is autistic. Often in response to hearing her diagnosis, they will say ‘but high functioning’, ‘but just a little’ or ‘but she doesn’t look autistic’. A doctor at our children’s hospital described her to another doctor as ‘having a little bit of autism’. This was in response to my disclosure and her insistence that her arm still really hurt and that it wasn’t better yet after being broken. Her perception of pain is quite different, but he could not get past his gatekeeper perceptions of what autism is and how it looks. Such narrow perceptions concerning autism and autistic people and nature of difference and what it means to be human, fuels the mainstream belief that autism is a disease. It props up the curist position and impacts on the attitudes of parents and support people in the autism and broader disability communities.
Her early poor social skills and ‘behavior’ was clearly bad parenting to the neurotypical medical and educational experts. Once her ‘behavioral’ issues were remediated through a range of therapies (OT, hearing, vision and non-behaviourist social thinking curricula) and the blessed relief of adolescent hormones (nothing like a shot of estrogen to calm down a progesterone laden girl) her obvious intelligence and non-stop patter got in the way. We were excluded because she was either not typical enough that it made people uncomfortable or typical enough it made others’ suspicious. She greatly values her non-neurotypical friends and those who are neurotypical, but considered disabled. It’s not really as clear cut as people imagine. She values the freedom to be herself with them in addition to just plain liking this broad range of people in her life who reflect humanity. Her 3 year old cousin is autistic, but also has Down’s syndrome. But he clearly presents socially as autistic. She understands him in a way that she does not her neurotypical friends who have Downs but are not autistic.
The gatekeepers of the autism mainstream not only determine social engagement and inclusion and even access to proper medical care, they effect the distribution of money and supports in school. The elementary school system was not prepared for my daughter 14 years ago and after 3 hellish years I removed her from public school and embarked on the home schooling adventure. I was not and still am not a lover of home schooling, but the alternative was explained to me by the soon to retire learning services coordinator for our school district. Unless I wanted my daughter to be treated as she had been and remain unsupported in the system, I needed to find an alternative. Why? Because all of their money and efforts were being put into her cohort entering high school, in 5 years. And it was true, they did a much better job when she returned to school in Grade 8 and spent a very successful 5 years in a large public high school, thanks in large part to the incredible support of the resource teacher, Barb.
But what really stood in the way of her receiving the supports required to function in elementary school? Her play therapist had determined at age 7 that my daughter learned about the world in a different way. Despite being at the top of her Grade 1 class she was largely non-functional in a school setting and demanded all the attention of the teacher. She was academically brilliant, in between the tantrums, hitting and screaming. The therapist’s supervisors determined that she could not be autistic as she was too smart. This despite an in class assessment, that was not shared with myself until we left the system, that she had been identified as potentially autistic. When referred to an eminent autism expert (a psychiatrist) by the public school, he determined that all she needed was Ritalin and said to me that “she will never amount to anything” if we didn’t follow the school’s need to medicate. The healthcare and education autism mainstream authorities had already determined what my child required, the formula was prepared, but we refused to drink it.
So I decided to plough my own field, because stumbling sideways across the ruts laid out by the autism mainstream gatekeepers was destroying any chance my daughter had to be a functional human being. Autistic people are humans, not mistakes and deserve our support to be the best versions of themselves they can be. If your muscle tone is so low that you can’t sit up properly, leading to constant movement just to keep your brain alert enough to contract the muscles required to remain upright, you are going to be hard pressed to be able to manage yourself in a classroom. If your hands can’t use eating and writing implements without exhausting you, it will impact on your social relationships, as people don’t understand a 10 year old eating with her hands or writing like a pre-schooler. If your touch sensitivities are so extreme that you hit other people or scream at them when they lightly touch you or brush past you it makes sense to find ways to desensitize that kind of immaturity in the sensory system. Occupational therapy helped enormously with these issues, allowing her to behave much more appropriately in public spaces, at home with her family and friends and in building up her stamina and self-confidence to be more social and engage in group activities.
If your hearing is so acute that when someone raises the tone of their voice in surprise or joy it makes you cry from the pain, then it is imperative to have an audiologist make it not hurt. If you simply don’t understand what people are saying because you spend most of your time trying to stop the onslaught of information coming at you through your eyes, ears and skin, you are going to spend your days screaming in the middle of the classroom. If your auditory cortexes are compromised to the point where your hearing processing speed is so slow you have no idea what has been said and you have to guess (more often than not, incorrectly), then its time to take steps towards resolving those issues.
If you can’t socially communicate with people because you don’t learn through observation nor understand the mechanisms of polite social interaction beyond rote learning of the rules, then its time to work with a speech therapist or other interventionist. Someone who specializes in pragmatic and social language learning or relationship development integration© strategies, taking an approach to developing Social Thinking© skills beyond “Look Me in The Eye” ©. No number of stickers on a board are going to make you put up your hand before you blurt out the answer to a frustrated teacher or sit still at your desk: if your internal environment is stuck in a chaotic tailspin or you are frightened of and confused by the people you are spending time with.
So I set out to build her an autism ‘wheelchair’, not so she could be someone she is not, but so she could be her wonderful autistic self without all that stuff interfering with her. Autism is not behavior, it is not your senses of hearing, touch and vision, and it is not a disease. It is a way of being in the world and experiencing the human condition that transcends how your physical body works, or in my daughter’s case, how her physical self challenged her. There is no cure for being human. © But all humans require support from those that love them.
I soon learned that non-mainstream school programs were no easier than the public system. However, leaving public school gave me control over educational funding for her special requirements, and the right to make all the curriculum decisions. I had several secret weapons; I was able to hire a community of incredible support people to work with my girl. Lynn followed her like a hawk through her activities in the community and challenged her to take perspective and insisted on manners. Kit Yee de-schooled her and taught her how to be with other people and ensured that her academics progressed. Ginny helped us on the road to diagnosis and taught her that it was ok to let adults be the boss (that they weren’t all incompetent boobs). Rachel taught her how to sit up and use utensils after age 9 and helped her learn to use her body. Carol made her ears stop hurting. Mary renewed our faith in teachers and Michele is the best damn therapist in the world. Stepping outside the restrictions of the autism mainstream allowed us both to finally heal from the traumatic assaults of the previous years.
Many of the educational consultants and teachers we encountered working in alternative home schooling environments were offended by the label of autism. I believe their resistance was due to autism phobia: ‘don’t identify as autistic because autism is a bad thing’. They laughed outright at non-mainstream approaches, such as the Wilbarger Protocol. Don’t knock it until your child is wearing the same pair of underwear for weeks on end, throwing the clean ones into the laundry basket to hide the situation. Even special education consultants saw her behaviors as the issue, rather than looking at how the environment (lights, noise, configuration) and the physical challenges (hypotonia, sensory integration disorder, hyperaccusis, central auditory processing disorder and double vision) might be manifesting what appear on the surface to be bad behaviors. The gatekeeper ego and the need to protect the status quo of a narrow behaviorist approach supported by government bean counters and curist focused charities, created constant roadblocks to simply getting the work of education accomplished for my daughter; an education that as a taxpayer I had paid for the right to provide her. Regardless of the school environment, public or alternative, the way to support autism had long been mainstreamed and if you were not willing to cooperate, then you were not welcome.
As a parent my goal has always been to provide my daughter with the tools and techniques for success in life, to be the best possible version of herself she can be, as an autistic person. I did not see a way to accomplish this by neither challenging myself nor my daughter. I could not follow that set of instructions the pediatrician handed me at the outset. I threw it in the wastebasket, but wish I had kept it as a checklist of what not to do with an autistic person. I certainly wasn’t going to listen to the very experts who had delayed the diagnosis and prevented me from supporting my child, as she deserved. ‘Keep it all the same, lots of routine and don’t expect too much’, was the only message they had for me.
If I could back up 15 years to age 4, when it was clear that my daughter had a tougher row to hoe than her peers, there are things I might do now differently for her. But given the choices I had: try to cure and whine about the misfortune, hide away (which was tempting to protect her) or take control, I do stand by the choices we made. People have often misconstrued my intentions or pooh-poohed the diagnosis. The autism mainstreamers were challenged by my refusal to follow instructions, and the autism acceptance folks and the alternative educators saw me as trying to change my daughter. I will admit to hoping while pregnant for a child with average chops, as I knew that with extreme intelligence comes challenge. But with my now known family history of autistic traits, I soon realized that she needed to learn things that many folks just inhale from the air. It was my job as a parent to get her what she needed.
I took charge because I was damned if she was going to be another statistic that the educators could point to as a case study: brilliant mind with no functional abilities. My daughter is an intelligent person and was able to say, enough, I don’t want to do this anymore. Then we would stop. I saw doing nothing as being like refusing someone a wheelchair because we should just accept him or her, as they are. But maybe they want to get out the door and go to the movies: what then? My daughter had her diagnosis explained to her when it was made at age 9, and at age 6 knew she had sensory integration disorder. She accepted her autism diagnosis, and then raged about it as a young teen when she felt excluded and then checked in to be sure that I didn’t wish she had never been born.
The goal has always been determined by what she wants to do and where she wants to go without having a ‘hawk’ accompany her. Despite some of the educators we encountered in the early years who wanted to focus on her IQ and ‘bad’ behavior or even to overlook her demands to be the center of everything, my daughter learned that you catch more flies with honey than vinegar and that the world does not revolve around her desire to always have the medium sized blue ball. My daughter attended high school with minimal supports in certain classes and most with no special support except exam and note taking supports. She attends university with those same note and test taking accommodations, and went on unsupported school trips with choir. There have been problems, sometimes serious ones, that were consequences of her challenges around navigating the social landscape of those environments. Ongoing and long-term paid work is proving a challenge, but I have no doubt that we will weather this crisis as we have all the others. The gatekeepers of the autism mainstream are blessedly more distant now she has become an adult, with a notable exception.
The autism/disability mainstream-critical-mass-I-know-all-about-autism bean counters have resurfaced in the adult supports arena. Her 18th year was spent focusing on assessments and forms to prove that she is an autistic person with view to government supports and funding as an adult. It was offensive and heartbreaking having to focus on what she could not do, rather than what she was doing, in order to show once again that she is an autistic person and deserving of supports. The more ‘high-functioning’ you are perceived the harder it is to prove your need. In our jurisdiction, there is now an initiative for autistic and FAS adults over 19 that ignores level of IQ and covers approved applicants with over 70 IQ points. A year of our life given over to that horrific process only to find out that once you are approved, the gatekeepers come in again and put you through a supports algorithm that determines relative need. Guess where my daughter landed in that contest of perceived need based on the disability hierarchy? I remember contacting her social worker about 5 years ago to enquire about supports for expensive therapies and the worker said, I have families in crisis and well you aren’t. The more competent you are perceived or assumed to be, the less you are paid attention to or considered worthy of support.
So, once again I have taken out my plough and am cutting a new way to get her to the optimal level of independence, whether than be living with me with supports so I don’t burn out, or living independently or with other people with support. But because she is smart and attractive and should be able to do well based on those smarts, the autism mainstream mentality will demand that we fight for every crumb and justify every bite she takes out of the public purse. We will have to re-explain and be questioned at every turn as to why she is in the programs and groups she is based on how she looks and is perceived. For 18 months between ages 10 and 12 my daughter tasted what it was like to have a visible difference, when she wore small white noise generators on her ears. They looked like hearing aids. Instead of assuming competence, the world assumed incompetence: neurotypicals, medical professionals, educators, special education professionals and other autism parents. Such a little thing carried heavy weight with it, a weight that carries people down the path of conformism and ensures a lack of ability to imagine a better way.
Despite being successful in raising and educating her, my daughter’s early years were lonely and isolating for us both: with no parent peers and no peer community for my daughter. When pregnant there is a certain expectation of having a tribe when you raise a child. I have never ever grieved the loss of the child that was never conceived, but I grieved long and steady as a consequence of the exclusion we endured from community (both neurotypical and disability) and the lack of a supportive network while raising my child. At age 36, I chose to not have pre-natal testing and consciously made the decision to parent whatever child came into my life: miscarriage can do that to you. Perhaps my lifelong aversion to joining groups cushioned me more than many parents raising a child with similar challenges to my girl. If not for our dear friends who stuck with us, some with kids, but primarily those without, my mental state by now would be a shambles. I have loved parenting my daughter and we have had fun and done some wild and crazy stuff, but it should have been easier and would have been if our society was doing its job properly.
We have known about autism for a long time. My parents were told to institutionalize my now 59 year-old brother when he was in primary school. They refused and paid for it personally and with a poor outcome for my brother. There was no support to keep your child with you and they had neither the education nor the means to secure what he needed. Add to that their own assumptions that his genius would carry the day. It could and did not. The autism mainstream at the time was to institutionalize or else. Fast forward 50 years. It’s not enough to deinstitutionalize the people, we all need to deinstitutionalize our thinking about what autism is, what autistic people need and who gets to decide. It’s not okay to brand an entire population of people a problem that needs to be wiped from existence.
It seems that her cohort, the now young autistic adults were the canaries down the mineshaft of a de-institutionalized, yet frighteningly compliant autism mainstream conformist mentality. A mentality that is still strong but that is coming increasingly under scrutiny by self-advocates, parents and the community at large, that has unknowingly funded this mentality. These young folks are changing the face of autism, despite their personal experiences, and that is a wonderful thing. But many paid with their childhoods, a time that can never be recaptured.
We owe them a very bright future, as we do to all the successive generations of awesome autistic people. We owe them all an apology for our failure to accept them and we should be ashamed at the notion of autism genocide. Our t-shirts say: Autism: Stay calm, its only natural selection© So, to all autism parents, if someone says their way is the only way, they are either lying to you or trying to sell you something. Its time to shift the weight of that critical mass towards: acceptance and engagement.
1. Favorite quotes about autism and aspergers, Dr. Stephen Shore
2. Merriam Webster dictionary, definition of critical mass
Cheri Rauser, Vancouver, British Columbia, Canada
Before becoming an autism parent, Cheri was the most uninteresting person on the planet.For the last 19 years she has had the most awesome tour of the world through the eyes of Isabell. The two of them most recently traveled in Spain to explore the art of the modern greats such as Picasso and Dali and while in Morrocco took a camel ride into the massive dunes of the Western Sahara. Their only regret while in the desert is not having the wild hamsters hop into their tent. In her spare time Cheri works as virtual librarian, while Isabell attends university and dreams of a world made of apple fritters.