I guess I am becoming a neurodiversity advocate. I am not reluctant, merely surprised. This wasn’t in my plans. I didn’t know I had it in me. I didn’t know I needed to.
I have come a long way this past year.
I have decided that I am ready to write about what I think I believe, now. That sentence is not meant to be wishy washy, but things are changing so fast that it is hard to keep up. A year ago I wrote about what I thought I believed then. A year from now I suspect that I will have continued to try to keep up and may have grown my beliefs some again.
Here it is for now, then.
I don’t want to change Jake. I don’t want to cure Jake. I don’t want to teach Jake to blend in or suffer through therapy where he works at becoming less obviously autistic. I want to help Jake learn how to thrive in situations that are not easy for him. I want to help Jake learn to navigate conversations so that he can maintain true friendships with people who value him for who he is. I want Jake to learn how to conquer his anxieties and fears so that he is not limited by them.
This may not seem revolutionary, if you have been following my progression on this blog. It is something that has been rolling around in my mind though, as I am reading Neurotribes and looking at the reactions from the autistic community. It is also something that has become more important to me as I am struggling to find the courage to explain autism to Jake. I also have been invited to speak to another class at my school about autism and how to relate to a friend with autism. I feel like it is so important to ground myself in my beliefs and to know where I am coming from. It impacts where I go, what I say, and how I act.
I believe that in our community, the ABA therapists who are working with our family are united with us in our goals and are compassionate, kind individuals who see Jake as a person and who have the time and resources to help him. Therefore, and because the government supports us with funding for the therapy, we are happy to have them be a part of his learning team.
Over the course of his maturation and growth, I am hopeful that he will learn tricks and tools to help him in situations where autism is a disability. Situations like job interviews, where shifting eyes suggest that he is untrustworthy, would be more successful for him if he could sustain eye contact or find another way to demonstrate his competence.
There is something about people who struggle. They are made stronger. The Bible says that it is easier for a wealthy man to fit through the eye of a needle than to enter the kingdom of heaven. When life is simple and easy, we don’t understand how much we need God, how much we need community, and how much we have to give. Jake is fortunate that he has us, faith, and a strong community to stand with him as he faces his struggles.
Rather than treating autism as something that needs to be corrected, advocates want it to be seen as something to be accommodated, and that disability is largely situational. If someone is in a wheelchair, you can either focus on curing the reason they’re in the wheelchair and let them wait at the bottom of the stairs until you’re done, or you can build a ramp. Neurodiversity advocates want ramps for our brains. What exactly that looks like is still a work in progress, but I encourage professionals to embrace it. Work with us so we can live our best lives.
I feel like sometimes I am the one who needs the therapy. I need someone to come in to my house and reward me for staying calm when Jake sings the same three notes at top volume for over 20 minutes. I need someone to reward me for realizing when he is feeling overwhelmed and when he is strategically driving his little brother insane with purpose. I would love to be coached on how to come up with things to help everyone stay cool and comfortable while I am making dinner. Unfortunately, there is no funding for that.
I jest, but in truth, I am realizing more and more that it is me who needs to change. I discovered this website today, https://theantioppressionnetwork.wordpress.com/allyship/ and it explains allyship as
an active, consistent, and arduous practice of unlearning and re-evaluating, in which a person of privilege seeks to operate in solidarity with a marginalized group of people
I am that person of privilege. Social situations make sense to me. I thrive on conversation. I talk out my feelings. I excel in interviews, in group situations, and don’t notice when things are out of order. I can keep my train of thought for several days, or several minutes, keep two conversations going while cooking and keeping an eye on three kids.
But I love autistic people. I love people who are disabled. I will stand with them work with them.
I believe that autism is a disability.
The distinction people are making is between the medical model and social model of disability. The medical model of disability, for those who may be unfamiliar, puts an emphasis on a disability being something ‘wrong’ with a person. In that model, disability is something to be corrected. Disability itself is seen as a source of reduced quality of life. The social model of disability, on the other hand, focuses on negative attitudes and physical barriers imposed by society, rather than perceived “flaws” in the individual. Neurodiversity rejects the medical model. It does not reject the concept of disability or deny that impairments exist. The primary difference is how disability and impairments are considered and addressed.
I had a conversation last summer with my sister-in-law about disability. She said that it seems like being autistic is a disability mainly because we (society) don’t understand, don’t make it easy, and put up obstacles for people who do not belong to the neurotypical majority. She suggested that being autistic was almost like being evolutionarily advanced, in a sort of way, except that the society is restricting the advancement. It resonated with me and I am still chewing on the idea.
I believe that the goal of therapy is to support Jake and teach him how to manage being autistic. I hope that learning strategies that work for him will increase his confidence and abilities to negotiate within our world and not lose any of what makes him who he is.
I believe that I have a role to play in educating all those I can. Everyone who knows him, everyone who knows an autistic, everyone who knows someone who is different and who is a minority and is therefore marginalized by the way our society runs. I can’t tell those in human resources that when hiring, to hire every shifty eyed individual. However, I can increase acceptance and understanding of different ways of communicating.
Most importantly, I can have faith in Jake. I believe in him. I believe in his abilities to solve problems. I believe in his dreams. I believe in his heart, his gifts, and his growth. I believe that he is created by a fierce and loving God who knows what he is doing. I can wait, I can watch. I can hope and I can pray. And I can find what I believe and stand firm in it.