Are We Listening?

The audience waved their hands in the air – the deaf sign for waving. There were others who rocked back and forth, some other adults who gracefully flapped their hands. Drake sat in the front and squealed in acknowledgment when the speaker said, “just because you don’t cry, doesn’t mean you are not sad,” in acknowledgment to how many autistics take time to process their emotions. The squeal was a “yes yes!” to the speaker’s comments, and in any other setting, this highly intelligent, non verbal autistic eleven-year-old may have been asked to leave, or others might have stared, thinking that he didn’t think of anything at all. Yet Drake kept doing this. He sat longer than any other eleven-year-old I’ve ever met and made his noises in acknowledgment of the important points.

“I am fortified by being here,” he wrote on his Lightwriter.

I sat in the room and wished Adam was with me, his soft five-year-old hair brushing my jaw, snuggling up to me as he always does, and then taking breaks to jump up and down. Yet, I felt comforted in knowing that he would be there next year, and the year after that. I felt comforted that all of these people are him years from now, and how privileged I felt that they were paving the way, for it is a tough way, like swimming up a rapid flowing stream.

It is rare to sit in a room with so many other autistic people, some walking back and forth in the lunch room humming to themselves in a heightened perhaps even ecstatic state, where I can only imagine in other less accepting settings, would be frowned upon. When I came to squeeze into the small space where this young man hummed to deposit my lunch tray, he politely moved away to make room for me, extremely aware despite the fact that others would believe otherwise.

When I saw him next time in the leisure area, he was asking others to play a board game with him. Other autistic kids were hanging out together, and sprawled themselves out on couches in front of the TV, not unlike other teenagers. Around the grounds, people wore badges that indicated if they wanted to talk, if they would only talk to people they knew, or if they did not wish to talk at all. There were many times I wanted to flip my own badge that indicated the latter – as I am a person who likes to absorb and observe, yet have been taught to socialize and be diplomatic and suffer from a compulsion to keep that impression going. Although it’s a skill I’ve acquired, I still find it exhausting. I wished that those badges existed at the many functions I have attended, where most people pretend to be something that their not, or interested in things that others say that they actually have no interest in at all. I consider all the wasted time I’ve had to spend doing "small talk." and all the time I spend in explaining life as we know it to people who don’t have the time to understand.

The heat was oppressive this time of year. Yet, we were shaded by trees. My hair unkempt and my skin moist from the humidity, I unraveled. I could do what I needed to, to think. We were free to lie down during lectures, or roll up and be comfortable on the otherwise uncomfortable frayed wool couches -- remnants from the 1970’s. No lights were on in the summer heat, the hard-working garbled hum of old air conditioners tilting precariously in the windows of the lecture room.

The atmosphere was as honest as the discussions were. We tried to figure out how to manage all the issues confronting autistic people today, how to give another message to parents that there are more options than they are aware of – because they don’t hear it when all they hear about is ABA (in Canada specifically). The atmosphere was welcoming, where fear and confrontation were strangely absent. Strange because it is a sad reality of autism politics these days – where some non autistic people never get exposed to disabled people to hear the real views and issues. It was strange as it was relieving. This was autism, and it was comfortable. I didn't have to be appropriate, I could say when I had to leave without a guilty fuss. No one will judge me here. And no one will be judged.

It’s called Autreat. It’s a place I’ve never felt or experienced before, and I will want Adam to come again so he too can be fortified. Adam’s fortification is what’s tantamount here, as I try to raise him so that he knows who he is with autism, amidst a world that doesn't understand it or explains it inappropriately. It is important that he understand himself as not a defect, but as a person. It is why we as parents cannot accept misery rhetoric, because no matter what level of “functioning” (that term means nothing as it has no bearing on either intelligence or awareness), no autistic child should have to grow up in an inhospitable environment that threatens their self-worth. Inhospitable and unsafe environments are those in which we seek to normalize and reward normal responses to tasks where the autistic response is never acknowledged, rewarded or accepted, thus valued. By never rewarding an autistic person for being autistic, we threaten their self-esteem and identity. Most will grow up being confused because every well-intentioned therapist was so “nice” to them.

We have to train our therapists and clinicians to understand autism – because most of them currently do not. They do not yet understand how an autistic person learns. They turn to operationalized methods that all seek at this time to make the child not autistic, without valuing the autism. DRI and RDI are also designed to “create a mind,” or have a child "play normally" to which the autistic audience gasped in disgust. What are those "gurus" implying? That the autistic people who could sit and listen, and contribute, either verbally or in writing need to re-create their minds in a fashion that suits the rest of the so-called "normal" population?

I surmised that many parents are and are reluctant to give up ABA becasue they may not understand that there ARE so many options and so many opportunities to educate and for a great quality of life. The latter is what hopefully unites us. What disunites us is the definition of what that quality of life entails – a life with or without autism. I seek the former because I have seen that we can live a good life, thank you very much.

Quality of life is not determined by whether or not you drive a car, but rather, what you make of your life, and your attitude. Autistic people are capable, and how can we express to parents who only see -- particularly those whose children who are more profoundly affected by the disabling aspects of autism – sensory issues, anxiety, no spoken communication – that their children are there and aware.

How can we express that the most important thing – our children’s right – is to be who they are, but to provide AC (augmentative communication) in the absence of speech, instead of trying to force them to talk when they cannot.

How can we express that it is the teachers and clinicians who must learn how an autistic person learns, and not expect a typical response that can render an autistic person a robot. (All an autistic person ends up learning is to respond the way the instructor wants so that they can get the hell out of there).

How can we express the dangers of therapies that try to teach in a way that is not natural – for our benefit so WE can feel satisfied that the child has responded – that the child may in the future as a result of such approaches, not understand who they are?

This is the most important aspect. Know who you are. Accept your autistic child for who they are because this will allow them to know themselves. Pave the way for acceptance and yes, teach. But learn first. Learn how an autistic person learns and keep trying to adapt until you find the method that clicks with your child. That will constantly change.

Be a parent, not a therapist. Do not treat your child as a project, but rather, treat them and raise them as a child. Model actions so that a child can learn. Do not expect typical answers to “what is this?” and other typical questions. Find out ways to pull out what the autistic child does know. Do they know and answer better on the computer? Then use that. Accept all forms of communication, for they are valid and real. We are all obligated as parents to find the AC that works best for our children. That is their right to have over and above all those other therapies and monies wasted on “behavioural therapies.”

Allow breaks for autistic children to re-focus. Truly seek to understand their sensory needs. Do not offer artificial reinforcements, like “good talking!.” They are fake and the child will know it. Accept echolalia as sometimes the only language a child can retrieve, particularly in moments when they are overwhelmed, and then listen to what their body language and faces are telling you.

Most parents want the best their our children. The difference is in how we regard autism – a medical disease, which it is not, or a disability with social implications, in other words, we have to deal with the societal barriers that obstruct the opportunities for our children. We cannot accept the latter. We must accept autism and move on with the real barriers – the attitudes that will continue to proliferate segregation.

We need to be advocating for inclusion in the school system and for the accommodations that need to be made to acquire that. We need to educate others as to the value of doing this – for all children, not just the disabled ones – in cultivating sensitivity and understanding. We need to teach our children how to advocate for themselves – yes, even the non verbal ones. And for those who are more profoundly affected by the more disabling aspects of autism, we can seek the help of other autistic individuals to be mentors and to advocate for the services that do not degrade and oppress others.

The one thing we must do is to make other parents aware that there are so many options about which they hear little or are belittled by an ABA movement that continues to espouse inaccurate facts about ABA under the guise of false scientific “proof.”

We need to stop participating in genetic research studies which determines only “prenatal risk” and threatens the existence of autistic people. This research is done under the guise of providing “better and earlier interventions,” which are non existent. What babies need is love, support and engagement like any other baby. The only purpose of this research is to determine genetic risk factors. We do not hear about research that seeks to help autistic people be the best autistic people they can be.

We need to redirect our attention to merging help (with the more disabling aspects of autism) with respect (respecting the autistic person’s right to exist) and realize that there is life beyond an over-simplified “cure.” Further, helping the more disabling aspects of autism (anxiety, sensory issues) can exist outside of a "cure" for autism.

I urge every parent (but for those who visit this blog, I bet I’m preaching to the choir), to actively seek out the alternatives and become proactive in not accepting strategies that change your child to “appear normal” because they will ultimately be very damaging to their self-image as teenagers and adults, and we will have greater problems to contend with later. There are options outside of ABA which takes time from you to actively watch and listen and respect your child.

Above all, as Anne Donnellan said in 1984, “make the least dangerous assumptions” about your child. Or as Douglas Biklen said, “presume competence.”

“The least dangerous assumption states that in the absence of absolute evidence, it is essential to make the s assumption that , if proven to be false, would be the least dangerous to the individual.” (Zach Rosetti and Carol Tashie from the Communicator, Autism National Committee Newsletter, Inclusive Education edition.)

The constant banter that autistic or non verbal people who do not look you in the eye are “not there” or “not aware,” or “cannot speak for themselves" is an extremely dangerous assumption. All people can speak for themselves in many different ways.

Are we listening?